By Sammi Nuss (Co-Chair KASA) with a little help from one of my strongest supporters, my Mom, Ruth Nuss (Board President of PATH/FVCT)
Supported Decision-Making (SDM) agreements are something I am very excited about because they are a less restrictive alternative to Guardianship for people with disabilities who are able to make decisions for themselves, with guidance and help from people that they trust and have chosen as their supporters. Lots of people with disabilities need Guardianship because they are not able to make their own decisions and have limited life skills. There are also a lot of people (young, adult and elderly too) that CAN make decisions with just a little support, some of these currently have Guardianship, maybe because they don’t know there is an option and could be independent with an SDM.
Let me tell you my story:
When I was in my senior year of high school, I was nervous about graduating because I did not know what was going to happen after I left there. Our school had advised my Mom to apply for guardianship because they were worried about me and worried that my Mom would not be able to help me once I was an adult and had left school and I am sure they didn’t know there were other options.
My mom and dad talked about Guardianship, they researched what it was, what effects it would have on me being an independent person and even printed out the forms to apply for it, but they really didn’t feel like it was the right thing to do for me but knew I needed something to help me.
I decided to stay in High School an extra year, so I could get more work experience in the work exploration program, and I continued to volunteer at a local preschool (I had been doing that for a couple of summers already). That year I also joined CT KASA. In October 2015, my Mom and I went to the Building A Great Life Conference at the Farmington Marriot. One of the breakout sessions was titled, “Alternatives to Guardianship” and was about the Supported Decision-Making Agreement. My Mom went to this session and came out SOOOO excited that she talked about it all the way home. They had been running a pilot program in Massachusetts but they didn’t have them in Connecticut.
My Mom talked to the lawyer who was giving the talk and asked if we could make our own and she said “Yes!”, as long as it was signed [witnessed and/or notarized], it would be a legal document. My mom got the document they were using in MA and changed it to make it work in CT. The document lists all of the people that I want to be my supporters, for different things like finances, medical, education, other life decisions, housing, and other things. You can choose whatever categories you’d like. I chose my parents and very close family friends as supporters so I can ask them for help with making decisions that I do not understand or am struggling with making or just need another opinion. All of the supporters sign the document in front of witnesses to make it legal.
Having a supported decision-making agreement allows me to self-advocate and make decisions about my life and be independent. So far, we have the agreement on file at the doctor’s office, and at the college, because the teachers there are not allowed to talk to parents without the agreement (and a FERPA* form).
I’m doing great with my independent life; I graduated high school in 2016 and was offered a paid position at the daycare where I had volunteered and am still working there. I’m also attending Community College working on my Early Childhood Education certification.
Recently my mom and I joined a Supported Decision-Making Coalition where we are trying to educate people on options to guardianship. The Coalition is planning a conference in June; watch this space for more information as we finalize the planning.