SDMNY is charged with creating an educational campaign to introduce supported decision-making to a large variety of stakeholders including people with intellectual and developmental disabilities; their families; service providers; education and special education professionals; lawyers; judges and the court system; legislators and the general public.
We will do so through:
- Information sessions for stakeholder groups and organizations;
- Written and print materials, including plain language materials;
- The SDMNY website, forums, blogs and social media;
- Presentations at professional conferences;
- Articles in professional and more popular journals and publications;
- Videos and webinars.
For a general introduction to supported decision-making, you might want to listen to Gabby’s story or Michael Bach, check out the tool bar at the top of this page, or visit our Resource Library.
Supported decision-making (SDM) is the process by which a person with an intellectual or developmental disability (I/DD) makes decisions with the assistance of a trusted supporter or supporters.
SDMNY is currently running two pilot facilitation projects to demonstrate how SDM can divert persons otherwise at risk of guardianship from losing their rights, or how effective use of SDM can be employed to restore rights to persons currently subject to guardianship, using a three-phase facilitation model.
In a series of meetings that may last over several months, a trained SDMNY facilitator will work with the person with I/DD, who we call the Decision-Maker, to identify areas in which he or she wants support, who she or he wants to support him, what kinds of support she or he wants, and how he or she wants to get that support. The facilitator then works with the supporters to educate them about SDM, and then, with everyone together to facilitate negotiation of a Supported Decision-Making Agreement (SDMA) that reflects their understanding and that can be used with third parties.
Different facilitation models have been used in SDM pilot projects in the US and around the world, and we have drawn on them to design a way of facilitating SDM that will best serve New Yorkers with I/DD to avoid guardianship and maximize self-determination and inclusion.
Supported decision-making (SDM) is part of the human right of legal capacity—that everyone has the right to make his or her own decisions, regardless of disability.
In the past, parents and others have been concerned that their children with I/DD can’t make decisions, or can’t make good decisions. They have been told that getting guardianship is the best way to protect their children, even as those children become adults.
Looking at people with I/DD through a human rights lens, we are able to see that by giving them appropriate supports to make their own choices, they can become more self-determined, more integrated into the community, and so also safer and better able to protect themselves.
SDM has the potential to transform how we see, understand and treat people with I/DD, and so also how we educate them to lead inclusive and fulfilling lives.
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.