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.hunter.cuny.edu/videos-sdmny-stories/.