Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities
Jason’s Connection: Giving and Getting the Support We All Need
In 2013, I founded Jason’s Connection as a way for people with disabilities to learn and share information about supports and services that can help them live their best, most independent lives. We help people identify and connect with resource providers that meet their specific needs so they can choose and direct their supports and services to the maximum of their abilities.
As an Autistic person, as it would be for any person, running a successful and growing non-profit increases my self-worth and self-determination. Self-determination has always been important to me. I believe that we are all the sum of our choices. If people are not allowed to make decisions for themselves, they lose a large part of their identity because it is harder to feel invested in their lives or even like they can have a life of their own. That’s why, at Jason’s Connection, we give people information and resources so they can make the best choices for themselves.
When I was younger I was not always given the tools I needed to build my own self-determination. I was worried for my future and did not know if I would be able to live on my own and have a good life. However, as I grew older, I started seeking out and using support to help me identify and achieve my goals, complete everyday tasks, and make decisions. I began using Supported Decision-Making (SDM), although I did not call it that at the time, to help me build my self-determination and get the support I need to make decisions and direct my life.
Over the years, I have learned that I can see the “big picture” and know what goals I want to accomplish, but need help slowing down and breaking tasks and decisions into “smaller bites.” Therefore, I use SDM with people I trust to think through major and everyday life choices and activities such as where to live, managing money, medical and self care, and food and lifestyle planning. I also use support to plan and manage my schedule, to set and keep appointments, and have a chance to get out of the house for fun. At work I have asked for and received support around administrative tasks such as creating and completing an accessible timesheet. In these and other ways SDM helps me build on the things I do well, and work through things that do not come as easy to me, just like it does for everyone else.
In that way, SDM empowers me to make the most informed and effective decisions in my life and work. That is important because the way I do things and make decisions may be different from other people, including the people who support me. By learning about my strengths and needs, and working with people I trust, I have developed a way to understand, think about, and make decisions that works best for me.
SDM also helped me create Jason’s Connection. From the beginning I had a very specific vision that was a little different from the people who helped me found it. However, we talked and worked together to overcome our differences and create a company that had my vision at its center. At the same time, we developed ways to share and frame information that are most effective for our audience.
Over the last six years I have had the pleasure of seeing our vision and values reach hundreds of thousands of people. This has also given me confidence to be self-determined in other areas of my life. With support from my family, friends, and professionals, I took more control over the types of services and supports I receive and the people who provide them. This helped me identify and use support to expand my role as a public speaker, attend and finish graduate school, and work at the Burton Blatt Institute at Syracuse University as a project coordinator.
I continue to run Jason’s Connection and use SDM to help me in its day-to-day operation. This lets me focus on the “big picture,” like the heads of most companies. However, I regularly talk with my partners and supporters about how best to meet our audience’s needs for information and resources while keeping to our core message of self-determination and independence. After all, using Jason’s Connection can be a form of SDM for our community: They receive information from us about possible providers and can use it to choose the ones that are best for them. Therefore, we want to make sure that people can access truly useful resources to help them exercise choice and self-determination in their lives.
Using SDM has taught me an important lesson about self-determination: While being self-determined means you are in charge of your life, it does not mean that you must do so alone. We all give and get support, every day, that helps us do our best work and lead our best lives.
This article was supported, in part, by funding from the U.S. Department of Health and Human Services, National Institute on Disability, Independent Living, and Rehabilitation Research through Grant 90DP0076-01-00. For additional information on this and related grants, see www.BBI.Syr.Edu. The opinions expressed in this article are those of the author and do not necessarily represent the views of the U.S. Department of Health and Human Services or any other funding agency.