Jason's View

My Personal Story - Supported Decision Making

22 Nov 2019 by Jason Harris

My Personal Story: Supported Decision-Making: From Justice for Jenny to Justice for All! - Afterword by Jason Harris

Hi, I am Jason. I and many people I know use supported decision-making in our own lives. I did not necessarily realize this until I read “Supported Decision-Making: From Justice for Jenny to Justice for All!” to edit it for work. Let me introduce myself, I went to college at a small college in my hometown Cincinnati, and then went to Syracuse University for Graduate School for Cultural Foundations of Education. I also am an Autistic Person. That being said, I live on my own pretty far away from my parents as they are in Cincinnati.

I use supported decision-making in my own life to make sure that I am able to have supports in areas where I need a little support. A lot of this came from my parents when I lived in Cincinnati even though I still talk to them. All decisions end up to me as I am in the driver’s seat, but sometimes I might need a co-pilot to help me navigate. Some of the supports are things that many people have supports around, such as large-scale financial matters, medical decisions, and so forth. I also get some help with things such as food planning, and other decisions. If I feel I need support, I ask one of the people who works with me to help me break down the decision, especially if it is has a lot of parts or a long-term process. These are also things I still do with family and friends if I feel it is appropriate. 
Ultimately, with anything it my choice whether to ask for support. Much of the support I get and help making some decisions are similar to how my family helps my sister make decisions or support her to make decisions. 

The reason is, everyone informally uses supported decision-making when they ask loved ones or advisors for advice on something; they want more context or information or other reasons in making a decision. This can be from a family member and friends, advisors such as financial and school, or bosses or professional mentors. In reality, throughout the history of human existence we have been able to exist, build societies, found democracies, make societies better for more and more people because we support each other, and people have asked and gotten help in making decisions because we as humans are an interdependent species. 

For me personally, I have been using this style of supports consciously since around college - even though I never put a name to it. It took me a bit to get used to, like most people who are coming of college age and going out on their own making decisions for the first time, but also as someone they knew had some type of learning disability. Since I was really young, I did not always get to make decisions or get support in making decisions but was told what to do or not do. That means for me it takes practice to get used to being able to make decisions but also because of many reasons like not wanting others to see me as unable or being scared to ask, sometimes it is hard to ask for help or get support. Ironically, in a way the college I chose to go to for undergraduate studies I chose because it had supported decision-making. Let me explain. At the college I went to, there was a program to help people with learning disabilities achieve success, but you still were a matriculated student at the college. They had supports for time management and tutoring for your classes from retired professional teachers. I would use those supports to plan and decide what I was going to do for projects and more. A few years into college I also worked with a life skills person who would support me in making decisions such as picking my first apartment. After that my parents helped me, and then I moved to Syracuse. I generally didn’t have too much support through grad school other than a tutor who would help with some organization. Now, that I got a job at Burton Blatt Institute and Syracuse University though living here more permanently, the support I need changed. 

This actually leads us to this book as it was the first project to read and make comments on this subject. As someone who read this book with the idea of this being somewhat new, it resonated with me a lot. It gave me ways to think about how to use supported decision-making better with family and friends but also those who work with me. The great thing, though, is this book is full of guidelines and not rules. There are many things I did in this book already and have adapted to do. There are other things that are not useful to me that I do not use. I have no supported decision-making agreement. I am not in the past nor now under any guardianship. I, just like many people with and without disabilities, occasionally need help making decisions. It has been and always will be a fact of life for me, those around me, and humanity in general, with or without the codified term of supported decision-making. But recognizing it and understanding it makes it better for me to be able to say when I want to use it and when not, and how to make sure the type of support around decision-making is what I need for that particular instance. I have directed some of the people who work with me and my family about supported decision-making so they can help me when needed. This is especially true in the part of supported decision-making that talks about breaking down decisions, something I can need help with because I tend to be a big picture thinker and can use help getting to the steps needed. As well, the book stated making people have certain areas where they help you with decisions, and that is something I have made sure to consider as working with people. I know certain people who work with me on some health-related things, household related things, and social things. At the end of the day, I hope, like myself, this book taught you things and got you thinking. 

Supported Decision-Making: From Justice for Jenny to Justice for All! is available on Amazon: https://www.amazon.com/Supported-Decision-Maki…/…/B07YQCK2VX

Jason Harris

Founder of Jason’s Connection – an online resource for those with disabilities, mental health, aging and other needs. Jason was awarded an M.S. in Cultural Foundations of Education and Advanced Certificate in Disability Studies from Syracuse University.  Jason is also a Project Coordinator and Research Associate at the Burton Blatt Institute, an international think tank for Disability Rights and Human Justice at Syracuse University.  He regularly contributes to the blog in his own series called Jason’s View and travels the country consulting and speaking about disability issues and rights. To read more from Jason Harris, read Jason's View