SDM Inaugural Planning Forum (October 2013)

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 project advancing supported decision-making as an alternative to guardianship. Approximately 50 people, including national and international disability rights experts, five Massachusetts probate court judges, individuals with disabilities, attorneys and providers attended the event to learn about the pilot project, which would enable up to 10 individuals with intellectual or developmental disabilities make decisions impacting their own lives through the supported decision-making model.

Featured speakers included Michael Bach, executive vice-president of the Canadian Association for Community Living, who said guardianship means “removing” the individual and giving him to another person who makes his decisions about health care, finances, living arrangements and relationships. “It means the world has to relate to my person and not to me,” he said, adding, “There’s something profoundly wrong with that. That does social and legal harm to people.”

Another featured speaker, former New York Surrogate Judge Kristin Booth Glen, told the gathering 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.”

According to Judge Glen, 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’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.

Bach pointed out that doctors, bankers, and landlords 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.

Another speaker, 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 for assistance. 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.

Chief among concerns raised by the Massachusetts probate court judges was whether the supported decision-making model had built-in safeguards to ensure that individuals would not be exploited by network members or by community business people. Forum participants suggested creating advisory committees, engaging in independent monitoring, and drafting regulations defining concepts such as least restrictive alternatives, fiduciary duty, and accommodations as set forth under the Americans with Disabilities Act.

Attendees included Curt Decker, executive director of the National Disability Rights Network; Jennifer Mathis, director of programs and deputy legal director at the Bazelon Center for Mental Health; Leslie Salzman, 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 of Documenta, a Mexico City NGO; and Michael Moloney, chief executive officer at Horace Mann Educational Associates.