March 26, 2015: Remarkable day for the supported decision-making project
Over the course of 90 minutes on March 26th, five individuals with developmental disabilities entered into Representation Agreements creating their supported decision-making networks. Supported by their families -- parents, siblings, shared living providers -- they each stood before a notary public and acknowledged their understanding of the agreement, including the people they designated to be their supporters. One by one, they signed the bottom line. It was a remarkable day. These five join another pilot participant who executed her Representation Agreement last month; yet another participant is scheduled to sign hers in the near future. See captured photos on Facebook at https://www.facebook.
October 2013: CPR, Nonotuck launch supported decision-making pilot as guardianship alternative
The Center for Public Representation and Nonotuck Resource Associates hosted a planning forum October 29, 2013, to launch an innovative demonstration project advancing supported decision-making as an alternative to guardianship. Approximately 50 people, including national and international disability rights experts and five
The Center and Nonotuck, a progressive social service agency, are developing a small pilot project to enable up to 10 individuals with intellectual/developmental disabilities in
Michael Bach, executive vice-president of the Canadian Association for Community Living, said guardianship means “removing” the individual and giving him to another person who makes decisions not only about health care and finances, but also about living, such as where to live and with whom to associate. “It means the world has to relate to my person and not to me,” he told the gathering, adding, “There’s something profoundly wrong with that. That does social and legal harm to people.”
Another featured speaker, former New York Surrogate Judge Kristen Booth Glen, described a case about a pregnant woman with an intellectual disability whom she ultimately decided should not be under guardianship. Through the support of her partner, his sister, a neighbor and a homemaker agency, the woman successfully demonstrated she could take care of the baby and run her home.
As Judge Glen explained, “You need a guardian not because you have deficits, but because the deficits keep you from managing the world. [This woman] was managing the world – her world.” She added, “These supports exist and are happening for many people, but we haven’t quantified them and made them visible.”
Bach’s presentation, “Putting Supported Decision-Making into Practice,” focused on will and preferences, the core of a supported decision-making formula. Everyone, he said, has will and preferences. The key is to have people in the network who know and understand the individual, regardless of how he or she communicates – orally, verbally, or through assisted technology devices or body gestures – and respect those preferences and enact his or her will.
As Judge Glen explained, a person’s network provides the accommodation that allows him or her to participate in life activities. Accommodation, she said, is the means by which a right is made real. “If human rights are about anything, they’re about equality and dignity,” she said. “You have to allow people to have human rights, to make decisions, and have those decisions recognized by others.”
Bach pointed out that doctors, bankers, and landlords, like others in community life situations, have a duty to accommodate. He said an individual’s supported decision-making network has to figure out how the individual arrives at the basic tenets of decision-making to appreciate, understand and foresee the consequences of a decision, and then assist the individual to communicate that in a way that doctors, lawyers, bankers, landlords and others understand.
He acknowledged there are legitimate concerns about third parties when a person allows or relies on a support network to interpret him/her to the world. Competent supported decision-making must be built on a relationship of trust, he said, adding that interpreters have a fiduciary duty to present the individual’s will and preferences.
Two Nonotuck staff, Kitty Curtin and Angela Procopio-Rahilly, told the forum about their long-time relationships with individuals with disabilities with whom they have shared their homes and their lives. “I depend on him and he depends on me,” said Curtin about Dan M., who spent most of the first 50 years of his life in an institution. He would be under guardianship if not for his 17-year shared-living relationship with Curtain. Procopio-Rahilly’s housemate, Carrie B., with whom she has lived for 16 years, is an artist and school library volunteer who uses a communication device. Her parents, who are her guardians, attended the forum to learn about supported decision-making.
In addition, Michael Kendrick, an independent disability rights consultant, gave a brief overview about intentionally created networks of supporters, with a focus on individuals who do not have a readily available pool of people to tap. He stressed the need to take time to listen to the individual who needs the support circle, and suggested the network could include advocates and “challengers – people who push you a bit,” as well as those from old relationships who may be redirected in new ways. Support circles also might include specific people who are recruited for specific tasks for time-specific periods.
Self-advocates Paige Emerson and Johnathan Jenkins told the participants about how they make decisions and who they rely on to help them do so.
Much of the afternoon pilot-planning session centered around issues raised by the
The judges also suggested an intensive outreach campaign to ensure the community was educated about the supported decision-making model to thereby understand probate court rulings favoring supported decision-making over guardianship.
In addition to the speakers, judges, staff and board members from the Center and Nonotuck, the forum was attended by disability rights experts and activists, including Curt Decker, executive director of the National Disability Rights Network; Jennifer Mathis, deputy legal director at the Bazelon Center for Mental Health; Leslie Salzman, a civil rights attorney and law school professor; Alison Hillman de Velásquez and Tirza Leibowitz from the Disability Rights Initiative at the Open Society Foundations; Tina Minkowitz, president of the Center for the Human Rights of Users and Survivors of Psychiatry; Leo Sarkissian, executive director of The Arc of Massachusetts; Mario Solorzano and Diana Sheinbaum from Documenta, a Mexico City NGO; and Michael Moloney, chief executive officer at Horace Mann Educational Associates.
All images © 2013-2015 CPR and Nonotuck Resource Associates