Second Supported Decision-Making Agreements Signing at SANYS New York City

On December 17, 2018, SDMNY celebrated the signing of three self-advocates’ Supported Decision-Making Agreements (SDMAs) along with their Supporters at the SANYS New York City chapter’s office in downtown Manhattan. This marked the second SDMNY signing ceremony to date, bringing the total number of Decision-Makers with Agreements to five. The ceremony was attended by family members, friends and two special guests, Vic Calise, Commissioner of the NYC Mayor’s Office of People with Disabilities, and New York Times reporter John Leland, who recently documented some of the negative outcomes of adult guardianship (https://www.nytimes.com/2018/12/07/nyregion/court-appointed-guardianship-like-prison.html). Vic Calise and SDMNY Project Director Hon. Kristin Booth Glen congratulated the decision-makers and supporters for their pioneering efforts in making supported decision-making a reality for persons with developmental disabilities in New York State. Matthew Smith and Joan Cornachio, as the two facilitators who assisted the decision-makers to develop their agreements, guided the decision-makers and supporters through the steps of signing and notarization for each agreement.

 

Young Adults at Cooke SKILLs First to Sign Supported Decision-Making Agreements in New York State as part of SDMNY

On September 25, 2018, two students from the Cooke SKILLs (Skills and Knowledge for Independent Learning and Living) Vocational Program in New York City were the first to sign Supported Decision-Making Agreements (SDMAs) along with their chosen Supporters. In a moving signing ceremony, the two decision-makers and their designated supporters (family, friends and carefully chosen experts) sanctioned the agreements before a notary. One of the decision-makers shared these remarks with the room full of people assembled for the event: “Supported decision-making will help me be more independent. It will help me with doing more things for myself.” One of the Cooke parents, who along with five other Supporters chosen by her son to sign his SDMA had this to say: “As a parent, I was always against guardianship. I struggled with it for years, especially because my son was capable of making decisions for himself.” Summing up her experience as a parent and now, as a chosen SDM Supporter, she continued: “I feel it’s our job as parents to help our kids keep their dignity and have the opportunity to exercise their rights. They should have a major say in making decisions that affect their life. It is a load off my mind. I feel more peaceful now that my son will be well taken care of, but won’t be told what he can and cannot do. That means the world to me.”

Hon. Kristen Booth Glen, SDMNY Project Director and Former Surrogate Judge of Manhattan, addressed the Decision-Makers this way: “By signing your Agreement, you are letting others know that you are capable of making decisions with support. Your Agreement will serve as a guide for you and your Supporters as you navigate life’s many challenges…By being a part of SDMNY’s pilot project, you and your Supporters are pioneers in demonstrating how SDM can work as a better alternative to guardianship. And, as well, you are part of a worldwide movement that honors and respects the rights of persons with intellectual disabilities to make decisions like anyone else. That deserves our thanks at SDMNY, and our deepest congratulations.”

Two additional Cooke students are currently in the process of drafting Supported Decision-Making Agreements as participants in the SDMNY pilot project. “Supported decision-making enables students to ask trusted people in their lives for help or advice, just as you or I do, when making important decisions or even day-to-day decisions that may seem minor. They can do this instead of giving up their rights through guardianship,” said Katie Riordan, Cooke SKILLs Division Head. “It is important to provide a variety of options and pathways to parents and families when discussing their child’s future. We will continue to partner with the SDMNY Project. Their work to improve the rights of the disabled and foster a sense of independence among our students is invaluable and represents an alternative to guardianship that some of our students may want to pursue.”

This fall, the Cooke School will hold an information session on the SDMNY Project for parents and families who would like to learn more about SDM as an alternative to guardianship.

SDMNY at The State of the Art Conference on Postsecondary Education & Individuals with I/DD, Syracuse University

On October 10th and 11th, at The State of the Art Conference on Postsecondary Education & Individuals with I/DD, Syracuse University, Self-advocate and SDMNY participant Ketrina Hazell presented on her experience with the SDMNY process as she closes in on signing her Supported Decision-Making Agreement. Ketrina’s session is specifically geared for students. New York City SDMNY Site Coordinator Joan Cornachio moderated the event.

 

City Buildings

SDMNY at the Brooklyn Public Library

On June 14, 2018, Kristin Booth SDMNY Project Director, presented Supported Decision-Making New York (SDMNY) an alternative to guardianship and Trina Hazell decision-maker talked about her experience in the program and how it has promoted her self-determination.

 

Elderly white-female stand next to African-american young female
young African-american female on wheelchair and African-American female stands behind wheelchair

Once again SDMNY Collaborates on Creating Awareness-Raising Videos Relating to Supported Decision-Making!

On May 22, 2018, members of the Supported Decision-Making New York (SDMNY) team and actors of the Outside Voices Theater Company (OVTC) met to film several awareness-raising videos relating to supported decision-making.

The videos, developed by the OVTC actors for SDMNY, demonstrate how persons with intellectual and/or developmental disabilities (I/DD) encounter barriers to making their own decisions. Through these videos, they hope to give a voice to persons with I/DD so that they may overcome those barriers and not only make more of their own decisions but also get the support they may need to do so!

African-american male dressed in superman costume is punching white male dressed in green mafia costume
group of male actors from different ethnicity standing in front of a room
White female and black male seating together in a read sofa

SDMNY Partner, Disability Rights New York (DRNY) Restoration Case Victory!

DRNY’s victory terminated a 17A guardianship for Michael Nacheiner.
View court’s decision: In the Matter of the Guardianship of Michael J. N., Petitioner

SDMNY Partner: The Arc Westchester’s Adoption on Policy on Autonomy, Decision-Making Supports and Guardianship

Read New Arc Westchester’s Policy: Adoption of Policy on Autonomy Decision-Making Supports

Piloting Personhood: Reflections from the First Year of a Supported Decision-Making Project

Check out the new article published by SDMNY Project Director, Kristin Booth Glen in the Cardozo Law Review. The article describes some of the lessons the SDMNY Project Director has learned in the first year of an ongoing experiment in implementing legal capacity through supported decision-making (SDM). Demonstrating the success of the SDMNY pilot project, the first in New York and the most extensive in the United States, is critical to influencing advocacy and legislative reform to promote and protect personhood.

View Article : Piloting Personhood: Reflections from the First Year of a Supported Decision-Making Project

Check out some highlights from Supported Decision-Making New York, (Year 2)

View: Project Updates Year 2 ( Apr 2017 – Mar 2018) flyer

 

SDMNY 3rd Training of Facilitators

On March 2nd, 3rd and 9th 2018, Supported Decision-Making New York (SDMNY) held a 3rd Training of Facilitators for volunteers from all over the New York City areas.

Thank you to all our volunteers!

 

Five training participants seated in a circle in a bright room discussing a small group activity.

INCLUDEnyc’s Jean Mizutani interviews Kristin Booth Glen, SDMNY Project Director

INCLUDEnyc’s Jean Mizutani interviews Kristen Booth Glen, who wrote many groundbreaking decisions as Surrogate Judge of New York County on the matter of guardianship for people with intellectual disabilities and who has written and lectured widely on the human right of legal capacity and supported decision-making. She serves on the advisory boards for the Center for Public Representation/Nonotuck Supported Decision-Making Pilot Project, the New York State Bar Association Disability Rights Committee, and is a former Commissioner on the American Bar Association Commission on Disability Rights.

Listen to Podcast: My Own Keeper: Supported Decision-Making v. Guardianship for People with Disabilities

 

 

Face photo portrait of white female senior citizen.

SDMNY Collaborates on Creating Awareness-Raising Videos Relating to Supported Decision-Making

On January 9, 2018, members of the Supported Decision-Making New York (SDMNY) team and actors of the Outside Voices Theater Company (OVTC) met to film several awareness-raising videos relating to supported decision-making.

The videos, developed by the OVTC actors for SDMNY, demonstrate how persons with intellectual and/or developmental disabilities (I/DD) encounter barriers to making their own decisions. Through these videos, they hope to give a voice to persons with I/DD so that they may overcome those barriers and not only make more of their own decisions but also get the support they may need to do so!

Keep an eye out on for these videos, which are scheduled to be released in late March 2018.

 

White female in a classroom instructing 5 individuals with intellectual disabilities

Cathy prepping Group 2

Ellen prepping Harvey

SDMNY at Long Island!

On December 12, 2017, at Brentwood, Long Island there was a very exciting meeting with a self-advocacy group run by YAI. Over 30 people showed up to hear Desiree Loucks-Baer from SDMNY speak about supported decision-making.

Desiree spoke about how most people need to have assistance and advice from others whenever they make big decisions. We ask our family members, significant others, lawyers, financial planners, etc. for advice and information. People with disabilities many times know what they want and can make their own decisions, but they also need information and advice to make those decisions. This concept really resonated with the self-advocates. The audience was very engaged and asked a number of questions. The supported decision-making movement is the beginning of something very exciting!

 

A white female standing in front of a room presenting to a seating group of approximately 20 individuals from diverse backgrounds.

A large crowd came to learn more about supported decision-making!

The American Bar Association on Supported Decision-Making

On August 2017, the American Bar Association (ABA) House of Delegates adopted Resolution No. 113 on Supported Decision-Making. The resolution urges legislatures to amend their guardianship statutes to require both that supported decision-making be identified and fully considered as a less restrictive alternative before guardianship is imposed and also that it be considered a grounds for termination of a guardianship and restoration of rights.

 

 View full:  Resolution No. 113 on Supported Decision-Making

 

Tony Phillips Speaks at UN Conference of State Parties Side Event on Article 12

On June 13, 2017, Tony Phillips, a prominent self-advocate and ordained deacon, participated in a panel of experts from Germany, Israel, and the United States on the right to exercise legal capacity and to receive support in making decisions. He shared his experiences, some of which influenced him to join the SDMNY pilot program in New York City earlier in the year. He spoke about a series of complicated health-related decisions he had to make over the past year. These challenging decisions made him realize that, as he puts it, “I can be independent and also need support at the same time.”

Because of the health issues he experienced, he found himself largely dependent on health and service professionals to help him through surgery and rehabilitation. He grew frustrated that many of these “professionals” were at times unable to be professional “because they get overwhelmed” not just by the number of people they serve, but also by the rules, regulations, and policies that sometimes get in the way.

Part of what drew Tony to supported decision-making was its potential to allow him to put together a circle of support of his own choosing, rather than rely wholly on professionals assigned to him. “It’s my agreement and I get to choose who is in my circle. I don’t have to include anyone from an agency, and I don’t want to.” He added, “I have people in my life who care about me who can help me when I need to make tough decisions, like I had to do about my surgery and rehabilitation. I didn’t think about using supporters then, and I think I made some mistakes that I wouldn’t have made if I had them by my side.”

While he expressed excitement about the potential of supported decision-making for him and for others, he warned that “it can’t become just another service.” Rather, “it has to be something that persons with disabilities can do on their own, without agencies.”

 

African-American wheelchair user speaks into a microphone from behind a table.

Tony Phillips (above) describes how his recent health-related decisions have shaped how he thinks about supported decision-making.