Project Evolution

2013-2015

Bettina Toner, CPR attorney and SDM conference planner, confers with conference speaker Kitty Curtain, a Nonotuck shared living provider.

Bettina Toner, CPR attorney and SDM conference planner, confers with conference speaker Kitty Curtain, a Nonotuck shared living provider.

In the fall of 2013, the Center for Public Representation and Nonotuck Resource Associates hosted a day-long planning forum to launch an innovative demonstration pilot project advancing supported decision-making as an alternative to guardianship. Featured speakers included Michael Bach, executive vice-president of the Canadian Association for Community Living, whose presentation, “Putting Supported Decision-Making into Practice,” focused on will and preferences, the core of a supported decision-making formula; former New York Surrogate Judge Kristin Booth Glen, who talked about a pregnant woman with an intellectual disability and a solid support system whom she ultimately decided should no longer be under guardianship; and Michael Kendrick, an independent disability rights consultant, who gave an overview about intentionally created networks of supporters, focusing on individuals without a readily available pool of people to tap for assistance.

Among the recommendations emanating from the planning forum were calls to ensure the supported decision-making model has built-in safeguards to deter exploitation; to create an advisory committee; to implement monitoring measures; and to expand outreach efforts.

Subsequently, CPR and Nonotuck assembled an Advisory Council made up of individuals with disabilities, parents or siblings of persons with disabilities, human service providers, judges, disability rights advocates, and medical professionals. The Council, which provides feedback and guidance as the project goes forward, acts as the SDM pilot’s own support network.

While CPR Project staff drafted explainers on supported decision-making and fine-tuned the SDM Representation Agreement identifying pilot participants’ areas of support and designating supporters, Nonotuck care managers canvassed their caseloads and discussed SDM with clients, families and caregivers. Approximately a dozen individuals expressed interest in the pilot. Some of the participants are profiled here.

As of the summer of 2015, seven pilot participants and their respective support networks have entered into Representation Agreements. Please visit Nonotuck Resource Associates Facebook page for photographs, posts and video updates of five individuals who appeared before the notary public and signed their Agreements on the same evening.

Executing an agreement – signing it and getting it notarized – is a crucial step, but in reality, it marks the beginning of the implementation of the supported decision-making process. Project staff are tracking how and where pilot participants use SDM in their lives so that ultimately we can assess whether it is effective.

In addition, the SDM Project contracted with the Human Services Resources Institute (HSRI), a nonprofit research entity, to build the evidence base for supported decision-making. Through case study analysis, including questionnaires, interviews and onsite reviews, HSRI is in the process of identifying best practices to determine if and how this pilot can be replicated as a model of an alternative to restrictive guardianships. The research component is supported in part through a grant from the Open Society Foundations.