We have often noted how our work at SDMNY is premised on the human right of legal capacity, as enunciated in the UN Convention on the Rights of Persons with Disabilities (CRPD) (GN 3/22/2024). We’ve also acknowledged the debt we owe to colleagues around the world who, since the CRPD came into effect, have worked to advance that right through advocacy, legislative efforts, and the pilot projects that were the basis for our 3-phase SDM facilitation process (Good News 9/15/2023). We have continued to share experiences and best practices, while recognizing the unique challenges presented in different parts of the world. Our commitment to this international collaboration has been further motivated by how proud many of our DecisionMakers and their families are to be part of a world-wide movement for the right “to make one’s own decisions on an equal basis with all others, to have those decisions legally recognized”, and to receive “the supports that make the exercise of that right possible.”
We take enormous pride in the fact that, unlike any other government in the world, New York has not only passed a groundbreaking law that recognizes SDM as an alternative to guardianship, which takes away an individual’s right to make their own decisions, but also compels recognition of such decisions by third parties if the decisions are made pursuant to a facilitated SDMA. That is, the legislature has recognized SDMNY’s facilitation process as the support that actually enables people with I/DD to exercise their right. That, in itself separates New York from every other state in the US that has passed some form of SDM or SDMA legislation. But our accomplishment in actualizing the human right of legal capacity is even greater because, unlike any other state or country, New York’s government is, in actual fact, providing the support of SDM facilitation to people with I/DD, first through SDMNY’s current OPWDD implementation grant, and then with OPWDD’s commitment to using the learnings from our pilot to scale up the model state-wide.
We recently learned that the importance of this singular accomplishment has been noted and applauded by the UN body that oversees the realization of development goals for persons with disabilities, and the CRPD in The UN Department of Economic and Social Affairs (DESA) Disability and Development Report 2024 (Click here for the full Report [support for decision-making is discussed at pp 290-293]) and, more specifically, in a report by the entity charged with overseeing human rights for people with disabilities, Good practices of support systems enabling community inclusion of persons with disabilities: Report of the United Nations High Commissioner for Human Rights (Click here for that Report where SDMNY is singled out at p. 91).The High Commissioner writes that
“Countries are at various stages of legal capacity reform, with differing levels of alignment with the [CRPD]. Some… have eliminated guardianship of persons with disabilities, replacing them with supported decision-making, while others have introduced supported decision-making regimes but have retained various forms of substituted decision-making, falling short to their international obligations.”
Significantly, the Report cautions that
“Although legal recognition of supported decision-making has progressed, societal attitudes and State-sponsored services have not kept pace. Typically, civil society organizations, especially organizations of persons with disabilities, lead pilot initiatives.”
The Commissioner goes on to name only two “positive State-Funded initiatives”, the first of which, and the sole comprehensive state-funded support for the right of people with disability to make their own decisions, is SDMNY!
The second recognized initiative is Support-Girona in Catalonia, Spain, which receives government funding for the more limited purpose of “provid[ing] decision-making support to individuals dealing with complex situations.” The Report’s joint naming, of which we were entirely ignorant, led Support-Girona to reach out to SDMNY and invite Director Naomi Brickel to an upcoming international human rights conference they are hosting,
“Dignified Lives, A Human Rights Issue”. The conference, in mid-March, is focusing on “Enabling Supports” and “Experience in Community Support” where we expect Naomi to share our story, our best practices, and to inspire others to push harder for the state support necessary to fully actualize the human right to legal capacity.
What we are doing, one-on-one with Decision-Makers and their supporters, and more broadly through the legislature and OPWDD, is not only critical for people with I/DD in New York, but the biggest success story to date in the international movement for the right of legal capacity. We are proud but humbled at this international recognition of our work, and excited at the new opportunity it presents to collaborate with advocates and activists around the world.