Borrowing from the experience of pilot projects around the world the academic and practice expertise of our Hunter/CUNY faculty associates, and in consultation with NYSACRA, we have developed a facilitation model by which persons with I/DD can choose trusted persons—often family members, neighbors or friends—to support them in making decisions in a variety of areas.
In our process, a trained facilitator, supervised by an experienced mentor, works with the person with I/DD (who we call the “Decision-Maker” or DM) and his or her chosen supporters to negotiate and formalize an agreement, the Supported Decision Making Agreement, or SDMA that sets out the obligations and responsibilities of the parties.
The Process in Brief
The facilitation process is made up of three phases, culminating in a written agreement (the Supported Decision-Making Agreement or SDMA), each of which is aimed at determining:
Which areas the person with I/DD (the “Decision-Maker, or DM) wants support in (i.e., financial matters, health care, living arrangements, etc.);
Who he or she wants to support him or her;
What kinds of support he or she wants (gathering information, helping to weigh alternatives or possible consequences; communicating decisions to third parties, etc.);
How he or she wants to receive that support (face-to-face meetings with individual supporters for individual areas; a “circle of support” for important, or all decisions; use of Skype and other technology for communication, etc.).
Phase 1: The facilitator works with DM to learn about how he or she communicates, makes decisions, what kinds of decisions are likely to arise in the long and short term, and who are the important people in the DM’s life from whom she or he may choose trusted supporters.
Phase 2: The facilitator works with the supporters the DM has chosen, educating them about SDM, and helping them “reposition” from people who make decisions for the DM, to supporting her or him in making her or his own decisions, including consideration of the “dignity of risk.”
Phase 3: The facilitator works with the DM and her or his chosen supporters to negotiate the SDMA, to ensure that all parties understand their roles, obligations and responsibilities; prepares a draft of the SDMA that all parties review and may alter; and oversees the signing of a final version.