This article is a discussion on how supported decision-making (SDM) affects the author personally and professionally. He explains how Jason uses SDM for himself and why he finds it to be helpful. While he is in a gray area of getting the services and supports that he needs, he considers SDM as a tool for growth, helping him determine his strengths, needs, and interests.
Supported decision-making (SDM) is something that is very important in my life. This is true for me both professionally and personally. Let me introduce myself. I am Jason Harris, an autistic person and researcher at the Burton Blatt Institute. As someone who has a master’s degree in disability studies and whose work involves disability rights, these ideas around disability in general, and SDM specifically, are important to my work and how I do my work. As well as doing work around SDM, it is something I use personally in my own life.
These are strategies around SDM that I use, not just because I am a person with a disability, but because there is so much going on in my life. Like most people, there is no way I could make all of life’s decisions without support from others. There is no way I can always have the information in all areas to make decisions completely on my own, and, at times, my own perspective biases me from seeing other points of view. That being said, part of why SDM resonates with me, like other people with disabilities, is because my own experiences have been discounted by others. People’s focus has been on my supposed weaknesses, instead of my strengths and interests. For me, the luxury of making my own decisions has not always been respected and supported, as people sometimes would assume that I am not capable, and it was easier for them to tell me what to do and make decisions for me. Like others, there have been times where I lost my sense of being in control of my own life and stopped practicing decision-making skills because of this. This was especially true between middle school and the beginning of college where I sometimes let others make decisions for me. This has had negative effect on my confidence and had me practicing “learned helplessness.” But taking disability studies classes at Syracuse University, working at the Burton Blatt Institute, and using SDM has helped me understand how important decision-making is, and this has helped me to start regaining control over my life.
Gray Area of Disability
It has been hard to regain decision-making skills because I am in a gray area of disability where it is hard to get supportive services. Whenever I have wanted to find services, it has always been tough because, while being a person with disability, I have generally not been “disabled” enough to get services from agencies and had to find independent people to work with me, who may not have connections to other resources. Being outside some of these systems has made it hard to know what is even available. I then encountered SDM, which could help me rebuild some of my decision- making skills.
Even before I knew about SDM and before I investigated any services, I did have some support and was able to make decisions. Even after discovering SDM and realizing what services might provide me, I still need decision-making support. It is a nuanced process and has a lot to do with the factors around you. It has taken time and encouragement to rebuild my skills, but also just trusting in myself that I can make decisions. For most of my life, I was either explicitly or implicitly told that I made bad decisions or could not make decisions for myself, and what I needed was discounted because I was being too sensitive or causing trouble, so other people would make decisions for me. Making decisions is a skill that needs to be practiced and cultivated. It has taken me some time to regain my own ability to make decisions, but eventually I became confident doing it via SDM with people around who helped me to build that confidence—my family, friends, support people, and colleagues. It has been vital in my process to have people who support me not only with decisions but also to help build the confidence I have lost. It is something that I am still working on, as 20 years of negative reinforcement does not go away quickly.
One of the things that made me interested in SDM is not only what it could do but also its understanding of my background growing up with a disability and the effect that outside systems had on me. This is true for a lot of other marginalized people or people in general, as we are all building skills. SDM is more than a program, it is an ideology. SDM is something many people do when they need support, they talk to someone. It is probably something people do without realizing there is a name for it. In many ways, SDM is how we grow as humans to form a society where we work together with others to overcome challenges. SDM still happens today when people talk to their doctors, financial experts, family, and friends, who support them in making both big and small decisions. My sister, who does not have a disability, also uses SDM by getting support from my parents, her husband, and others with whom she is close.
SDM as a Tool for Personal Growth
I have been able to realize that SDM is something that is helpful for me and builds on things I do already. Using parts of SDM is what I have always done with my family and people who support me. Learning more about SDM, though, has made me able to refine the process I use. This awareness came about because I learned more about how to utilize the ideas of SDM for my own personal needs, wants, skills, and so on. It is important because SDM is changing my perspective from what are my weaknesses or what I need to fix, to what I want out life, what are my interests, and what are my strengths. I do not ignore the fact that there are areas of my life where I am not at my best, but instead of seeing it as being incapable or less than someone else, as traditionally happens for many people with disabilities, it reframes the focus to something that is not my strong suit and may need support for.
This approach is really important for many reasons. In the past, often what people wanted me to work on seemed irrelevant, or there were things I thought should focus on first because it would make me more likely to follow through on other things. It has felt that most of what I have worked on in my life were short-term, little decisions to make it through the day or month. More long-term planning was generally put off. With SDM, I am the one who decides what it is I find important to make decisions and prioritize. I can focus on things such as social life, career, or relationships, as well as paying bills, medical decisions, and other daily tasks. SDM has also made it easier to advocate for myself when needed as I have had to around work, friends, family, and many other areas. I continue to get the support I need, but I also make more decisions.
There are many ways I personally use SDM. I generally try to divide up the areas of decision-making I work on with others. I seek the areas where I could use the support and then search for a person who has some ideas or expertise and can give advice. I do this to make sure I know who to talk to about which types of decisions. I also want to make sure more than one person who supports me is available because I do not want support to be centralized around just one. Centralized support around one person can lead to me being left in the lurch, especially if they are not able to support me, are busy, not focusing on my needs, or protecting me from abuse.
At the moment, I do not have a formal written SDM agreement for a few reasons. First, I am my own guardian, and have, to some extent, already been making many of my own decisions. Second, I have been generally working with people informally. I have applied for services through New York State, and I first had to go through a process from the Office for People with Developmental Disabilities called the Front Door to determine my eligibility. During this process, I actually made it through the Front Door process, but still do not have any services other than what I receive independently, limiting the access to the full range of services or access to agencies that could support me. The reason for this is because in New York, and many other areas of the country, most agencies only accept Medicaid to pay for services. I myself am not eligible for Medicaid because of my income. There is also a Medicaid buy-in program, but according to the contact person from the Front Door who is trying to help me, again, I make too much money. To become eligible, I will need to try another way, so now I have been investigating whether or I can use a special needs trust, which has its own problems. After the initial draft of this paper and during the pandemic there was many other times I used supported decision making to make the choice to go back to my parents when the university said it was going to shut down as it seemed like that showed it was going to be something big. I also used that to decide while I like Syracuse it was too hard to get support in New York state and move back to Cincinnati. I used that to navigate that process with BBI and now my current employer as well as building my ISP with the agency I get services from in Cincinnati.
Some of the decision areas I focus on are similar to what most people focus on, but some of them come from my own unique needs. While I do not want my main focus to be only on small things like paying bills, medical decisions, finances, or other daily tasks, those still come up and I do get support on those. A lot of times, for me, SDM may be help with writing, interpreting information in a document, or taking the time to actually look through my mail. For bigger, longer term goals, I generally have an idea of what I want. I know I want to be more social, more a part of my community, and to have deeper connections with people. I know I want to bring a disability rights and justice focus into my career. Where I need support is breaking down my goals and coming up with plans that I can follow through on, either with or without supports. I am ultimately in the driver’s seat, and the people who support me help me navigate. Although I still am new at recognizing SDM and still evolving on how I use it in my own life, it is better for me and many disabled people than the black and white approach of either having someone make all decisions for you or completely making decisions without any support.
Author was working with Cultural Foundations of Education and Certificate in Disability Studies when he wrote this paper.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) received no financial support for the research, authorship, and/or publication of this article.