Self-Direction Spotlight interview with Jason Ross by Caitlin Bailey
Alliance member Jason Ross identifies as autistic, and began self-directing his services in 2016. He has a Master’s degree in disability studies, is enrolled in film school, and enjoys horseback riding. Recently I caught up with him over the phone where we discussed the challenges and benefits of self-direction, and how he has overcome doubt to get where he is today.
Experts told Jason and his family that he would live in a group home after high school, and believed that college and a meaningful career were off the table. But today, Jason, who lives in New York and is forty-years-old, has a career he is proud of and is working on his second graduate degree. Jason works part-time for an Independent Living Center. There, he is as a peer specialist for adolescents and young adults who are transitioning into adult services. Soon, Jason will begin training to be a Support Broker to help his peers who also want to self-direct. Having earned his Master’s of Arts degree in disability studies last May, Jason is also now taking non credit classes at the School for Visual Arts to learn to direct films. He plans to start a film company in the future.
Autistic and Proud
Jason is proud to be an autistic person, and intentionally uses identity-first language to describe himself. Autistic and disabled people are inundated with negative rhetoric and images of disability. This negativity can hurt their confidence and wellbeing, so Jason feels it’s vital to share his pride in being autistic. Fittingly, Jason’s birthday is on Autistic Pride Day.
Making the move to self-direction took years of self-advocacy. He began the process in the early 2010s because he wanted to learn how to “be comfortable with all of life’s responsibilities.” To get to self-direction, Jason had to reject what he and so many disabled people have been told.
Self-Advocacy and Beginning Self-Direction
Jason was approved for self-directed services in 2014. The two-year process that led from his approval to beginning self-direction in 2016 was a struggle. “I find that specifically when it comes to self-direction… people have all these assumptions about autistic people. It doesn’t matter what kind of impairment they have; they have all of these assumptions that aren’t always true, but they think they are.”
Part of the struggle was getting his parents to be comfortable with self-directed services, who “had a hard time letting go.” The process led to some tension and power struggles as he looked for his own apartment and worked with a Support Broker to transition to self-directed services. As he shared, “you love your parents, you love each other — but even with non-disabled parents and children, there is a power struggle there too.”
Jason continued to advocate for himself, though, “because I had a lot of fight in me, tenacity, I knew I could do it.” In 2016, he began self-directing. With the help of a broker, a team of direct support professionals, and his Circle of Support, Jason successfully began managing his self-directed services.
Directing Films and Self-Directing Services
I learned from Jason about the incredible responsibility that comes with self-directed services. It takes intentionality, accountability, and self-confidence. Maybe because getting to self-direction took so much effort, Jason takes the role of directing his supports very seriously.
What Jason has learned about responsibility and leadership in graduate school and, now in film classes has helped him be better at self-direction: “In film classes, I’m learning how to direct. Learning that’s about taking responsibility for everything. That’s kind of like self-direction. That’s been very helpful for me. With self-direction, I’m responsible for everything. If I don’t do it, I have to take responsibility for it. If I’m in film school and my actor does something, I take responsibility for what my actor did.”
Although he has full control over his life and his choices, he still works with the people who support him to help them “understand the ideas of person-centered, my choices, my control.”
Earning a master’s degree in Disability Studies has helped him better educate and train his Circle of Support and parents. His parents still have doubts at times. “[Self-direction] brings on a little bit of fear still. See, I’m controlling my life now and taking risks, and that makes them well… that’s every parent through, in traditional services too. Lots of parents really don’t want to let go, but it’s a process.”
The people who support Jason throughout his day help him to stay on track to accomplish his personal and professional goals. He spoke very seriously about his role in managing his own time and the people who support him, again comparing it to the role of a director. “I didn’t realize how much the director is the person who leads, takes charge and takes responsibility. That’s like with my Circle of Support [and staff]; I have to take responsibility for them too. If they say something wrong or bad to me, I can take responsibility for that too. Maybe I said something in the wrong manner that I need to correct.”
The Importance of Self-Confidence and Affirmation
Jason did reflect on the toll that people’s doubts about his abilities have had on his self-confidence. When he is hiring and training his staff, he looks for people who will focus on his strengths and help him to build his self-confidence. His parents and Circle of Support are crucial to providing positivity and affirmation. He is also “working on not saying sorry anymore,” recognizing that “if I say sorry too much, it makes people think I’m unsure of myself.”
As I was reflecting on our conversation, I realized that our system doesn’t talk enough about the importance of self-confidence for people with intellectual and developmental disabilities. There is some research discussing confidence for people with physical disabilities and people who have an identity that would label them as a ‘minority’ or ‘other.’ The results from those studies are consistent. When people hear that there is something wrong or different about them for a lot of their lives, their confidence goes down.
Self-direction promotes autonomy and control. A major challenge disabled people face to self-direction is others doubting their abilities to control their own lives. Jason’s story reminded me why it’s so important for groups like the Alliance for Self-Directed Supports to advocate for the right of people to self-direct their services.
Advice for Others Who Want to Self-Direct
As we wrapped up, I asked Jason what advice he would give to other people who are thinking about using self-directed services. He told me that, even with all of the responsibility that comes with it, and even though it can take time to make it happen, people should absolutely choose to self-direct.
He recognized that “for some people, it can be tough at first—but the only way to do it is to actually do it.” For Jason, self-direction has helped him learn to take charge of his life in every way. It has shown him the power of perseverance, that he can and will achieve any of his goals, even if it takes a long time and a lot of failed attempts. His advice for anyone who wants to self-direct is to “work on it and work on it and work on it until it works.”
by Caitlin Bailey, board member, Alliance for Citizen Directed Supports