SDMNY’s Fifth Supported Decision-Making Agreement Signing Ceremony

On August 20, 2019, the SDMNY project’s first restoration signing and fifth supported decision-making agreement (SDMA) signing ceremony was held in Rochester, NY. Robert Terry, the decision-maker, executed an SDMA and celebrated with his supporters, who included family members and friends. Maureen Phillips, Director of Advocacy Supports and Community Resources at Heritage Christian Services and SDMNY’s Rochester site coordinator, had facilitated the Robert’s SDMA development process and guided him through the signing ceremony. SDMNY’s Project Director Kristin Booth Glen, NYC Site Coordinator Joan Cornachio, and Senior Project Coordinator Matthew Smith joined the ceremony remotely to witness the signing and to congratulate Robert and his supporters on their signing.

“I like that my family and friends now know how independent I am and exactly what I want”

Following the ceremony, Robert reflected on the decision-making process during the following Q&A:

Q: What was the best part of the process of developing an SDMA?

A: The best part is having the agreement at the end of the process. I liked working with my facilitator to come up with the right words to let everyone know how I make decisions, figuring out that I already make decisions with my supporters in a way that works for me and everyone and seeing how my family has gained understanding about how my rights were so limited by a guardianship. Also, I like that my family and friends now know how independent I am and exactly what I want related to decision making.

Q: How do you think your SDMA will help you going forward?

A: I am going to use it when I need it. I am keeping it with me just in case I need it any time, like when I’m on appointments. I am going to share it with the lawyer [DRNY] as we work on my guardianship.

Q: Do you think that your SDMA will be a useful self‐advocacy tool, and if so, why?

A: Oh yeah, yes I do. It’s handy and easy to share and I explored and captured my decision-making process.

Q: Do you think that other self‐advocates should explore SDM, and if so, why?

A: Yes, but the decision would have to be up to them to do that. If you want more independence and you think you are ready for it, yes, but it’s totally up to the individual person. I would suggest finding out more about it to make a decision about it.

Robert also appeared in a video produced by SDMNY about the August 2019 SDMA signing ceremony, which you can view here: https://sdmny.org/videos-sdmny-stories/.

Four women and three men standing in a dimly lit room
Two men and two women sitting at table with documents smiling
One man and one women sitting at a table. Man signing a document
Six people, 5 standing, one using a wheelchair, lean in to pose for a photo together in a brightly lit hallway

Ketrina Hazell, front center, poses with her (L to R) father, godmother, SDMNY NYC Site Coordinator, mother, and SDMNY Project Coordinator after a workshop on SDMNY at the National Resource Center on SDM’s symposium.

On June 11, 2019, Ketrina Hazell, a decision-maker who executed her supported decision-making agreement in December 2018, as well as one of her supporters, her godmother Nelle Richardson, co-presented on the SDMNY project alongside Hezzy and Joan at a workshop during the National Resource Center on SDM’s symposium in Washington, DC. During the workshop, Ketrina shared what her agreement means for her.

“When I was turning 18, my MSC [Medicaid Service Coordinator] would often question my parents as to why they had not sought guardianship for me yet. My parents would reply that just because their daughter had a disability, that didn’t mean she needed guardianship. They knew there had to be other ways to support me without taking my rights away.

“About 2 ½ years ago, I attended an advocacy group meeting where the coordinators of SDMNY presented an information session on the mission and goals of the pilot program. What I heard stuck with me. From that day on, I felt like I finally found the light at the end of the tunnel that I have been searching for in this phase of my life.

“Developing a Supported Decision-Making Agreement and choosing my Supporters for the areas of my life that I needed and wanted support in made a lot of sense when I started thinking about my future. But, there were some challenging moments in getting the process started. I wanted my parents to be on the same page with me and understand my vision for my future. I wanted them to appreciate the meaningful relationships I have with the people I call on often for support, and how they are truly a big part of my life. The hardest part for any parent of children with disabilities is the thought that they can’t be caregivers forever. Growing up, it was often only my parents and siblings advocating for me. My mom often told me it felt like her words were hitting against walls when dealing with the schools, but she never gave up!

“When I finally began to identify my group of Supporters with my SDMNY Facilitator, I was a bit hesitant because I know how busy everyone’s life can be. But once I started talking to people about SDMNY and gave them the choice to support me in my identified areas of needed support, they were ready to be onboard to be a supporter to me. They were proud of me for taking this step in my life to be more of a decision-maker. I am allowed to choose what’s best for me, although my supporters can be tough on me. All I need is my support team to share things with. Then, I can function. And, being a part of SDMNY has been great for my Supporters as well. They are becoming allies and advocates in the disability community because of me!

“I am already seeing that I might need to modify certain aspects of my SDMA, because life events happen! For example, one of my Supporters in the area of education has been meeting with me in person and through phone calls. She told me she is starting a new job and won’t have as much time to meet in person with me. So, we will mostly check-in through email and phone calls for now.

“Since signing my SDMA in December, I have made decisions with the use of my Supporters the way I describe in my Agreement. I have been trying to make decisions about various employment opportunities with the help of one of my identified Supporters for the area of employment. New opportunities have crossed my way these past few weeks. Just recently, I got offered the opportunity to be a teacher’s assistant for a young women’s organization summer program. Now, I am also completing my application to work in an after school program starting in the Fall. When I reached out to my Supporter, I told her that I was speechless that they wanted to hire me, because I thought they were just looking at my wheelchair and not me. She told me, “That’s society’s problem.” My job is to remind them to look at me and not my chair, and that my chair does not define me. You see me speaking here today, but communication is one of the areas I need support in. My Supporter encouraged me to send the email and schedule the appointment. This week, I did my observation of the program to see if it was something I would like doing. The next day I did a follow up e-mail with my resume, and now I just need to wait for the main office to call to complete my application process to hopefully be hired in the fall school year! How exciting!

“I see so much growth within myself since I started with Supported Decision-Making NY. I have been more honest about my life. My relationship with my Supporters has grown too. Especially with my godmother. I knew ever since I was a baby she was there for me. I didn’t really speak when I was young, but through writing I found my voice and we connected. She can see things in me that I never told her and she will just say, “Talk to me.” Today, she tells me she wants to get to know me in other parts of my life. She now accompanies me to most of my appearances when I am speaking, and reminds me to breathe so my anxiety does not take over. My godmother tells me often, it’s my life and it doesn’t matter what other people think. Today after all, I am living my dream.

“Sometimes I think of what my life would be like if I was under guardianship. I would never realize my worth as an advocate who can use her voice to reach people in all the ways that are important to me. I would not be free to truly do what makes me happy, because my life would be in their control based on their perception of my life. It scares me to think that parents are still told to get guardianship for their child with a disability because society still has a one size fits all approach towards understanding the capabilities of a person with a disability. Basic rights to be valuable members of their communities are taken away. The appointed guardian is in control of another person’s voice and life, and right to vote or get married. I believe that everyone as a voice. Even the voiceless ones have a voice.

“As a culture, we can change the idea for parents to be directed to pursue guardianship by teaching youth with disabilities advocacy skills, and help them to build a support team and to develop friendships and relationships with people with and without disabilities. We should also do our best to educate and share success stories with medical professionals so that we can begin to change their perception of disability and remind them there’s hope of a bright future for people with disabilities, and they can be in control of their life with support.

“Today it’s such a great feeling when I think about being in charge of my own decisions. Executing my agreement has given me more confidence in my ability to make decisions and to share the process of making those decisions with my Supporters’ guidance and trust. As I grow and change, I will continue to question my path in life and hopefully learn from both good and bad decisions! My Supporters encourage me daily to just fall into my blessings, follow my purpose and do what makes me happy.”

Ketrina also appeared in a video produced by SDMNY about her December 2018 SDMA signing ceremony, which you can view here: https://sdmny.org/videos-sdmny-stories/.

Fourth Supported Decision-Making Agreements Signing Ceremony

On April 30, 2019, the Cooke SKILLS program hosted the SDMNY project’s fourth supported decision-making agreement (SDMA) signing ceremony. Two decision-makers and Cooke students executed their SDMAs and celebrated together with their gathered supporters. Dr. Francis Tabone, Cooke’s Head of School, presided over the ceremony as well as SDMNY’s Project Director Kristin Booth Glen. The ceremony was attended by family members (some joining via web conference), Cooke teachers, and fellow Cooke students and alumni. Guadalupe Vidal, former SDMNY Project Assistant, and Joan Cornachio, the NYC Site Coordinator, both of whom facilitated these decision-makers’ SDMA development process, guided them and their supporters through the steps to sign and notarize each agreement.

 

Decision-maker sits with his facilitator and a supporter a table decorated with flowers to review his agreement.
Photo Credit: Hunter/CUNY
Decision-makers sits before an audience alongside two of his supporters to share his experience creating a supported decision-making agreement.
Photo Credit: Hunter/CUNY
Members of the SDMNY Hunter College team gather for a group photo.
Photo Credit: Hunter/CUNY

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.

 

Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY

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.

Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY

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.

 

Photo Credit: Hunter/CUNY
City Buildings
Photo Credit: Hunter/CUNY

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
Photo Credit: Hunter/CUNY
young African-american female on wheelchair and African-American female stands behind wheelchair
Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY

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
Photo Credit: Hunter/CUNY
group of male actors from different ethnicity standing in front of a room
Photo Credit: Hunter/CUNY
White female and black male seating together in a read sofa
Photo Credit: Hunter/CUNY

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

Photo Credit: Disability Rights New York

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.
Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY
Photo Credit: Hunter/CUNY

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.
Photo Credit: Disability INC.

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
Photo Credit: Hunter/CUNY

Cathy prepping Group 2

Photo Credit: Hunter/CUNY

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.
Photo Credit: SDMNY - Long Island

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.
Photo Credit: Hunter/CUNY

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

In June 2016, Decision-Maker Ketrina Hazell “Ms. Wheelchair 2018” Attended and spoke the Supported Decision-Making Symposium at our nations capital. Ketrina spoke passionately about how important becoming her own Decision-Maker has been a personal life changing event for her. Ketrina said in her speech that choosing her supporters to help her in various areas of her life made a lot of sense. “All I need is my support team to share things with. Then, I can function. And, being a part of SDMNY has been great for my Supporters as well. They are becoming allies and advocates in the disability community because of me!” – Ketrina

Ketrina continues her journey and inspiring other individuals with I/DD! Kudos Ketrina!