Robert Zotynia is a member of the Alliance for Citizen Directed Supports who self-directs his own services. Our board member Marian Frattarola-Saulino interviewed him for about how self-direction has helped him live a fuller life.
Can you briefly describe your experience with all three models of services and why you now choose to self-direct your services?
I used to go to a day program. It was okay for a while but most of the time I was bored. I didn’t get to decide what I wanted to do every day. I had to do whatever my group was scheduled to do, so I stopped going and hired staff to work for me at my family’s house.
Then I got sick and it was hard for my family to help me all of the time. Because of the pain I didn’t sleep much. We decided to try a group home. I lived there for about a year and a half. I still didn’t get to do what I wanted every day because the staff were always busy doing paperwork or I had to wait for the shift to change. Sometimes I made plans but couldn’t go because there wasn’t enough staff to stay with my roommate. So, my mom and I decided I would come back home.
How did you learn that you could choose self-direction?
My supports coordinator told me about self-direction. My mom helped me understand it. We also read about it. We signed up for lots of newsletters that helped me understand what it was and how I could use it.
What do you like most about being able to direct your own services?
The best thing about self-direction is I get to decide what I do and when I do it. I plan my days the way I want and can change my plans whenever I need to. I also really like hiring my staff. I get to explain the rules for working for me and train them on things that I think are important about me.
Do you have any advice for people who might want to try self-direction?
I think self-direction is great. I’m much happier using this model than traditional programs. However, it requires a lot more work so I suggest you get a supports broker to help you set it up, find staff, and learn about the rules and regulations. And the rules change a lot, so it helps me to have a broker to keep up on everything.
So you find it helpful to use a supports broker. How did you find out you could hire a supports broker?
I found out about supports brokers from reading all the newsletters and announcements that I get in my email. My mom also told me about it. She learned about it from her job. So, we talked to my supports coordinator. He helped us figure it out. He helped us understand that I could hire a broker through my financial management service, or I could use a brokerage.
How does your supports broker assist you?
My broker helped me find and interview staff. Then we talked about it and decided who I wanted to hire. I use the vendor fiscal model through Palco so we have to fill out enrollment packets for everyone we hire. My broker helps me do this and helps me talk to Palco if there is a problem. They also help me find things I want to do in the community. We do lots of person-centered planning and thinking so everyone knows what my preferences are. My broker helped me connect with Self Advocates United as 1 and now I work for them. So now we are working on a plan for when my mom is not able to help me anymore. My broker helped me facilitate a PATH and helped me invite people to do this with me. We also decided to start a microboard. The board members are friends and family who will help me manage my life. My broker is helping us file all the paperwork to become a nonprofit and is suggesting different types of technology so I can communicate with the microboard and also so we can meet by video. There’s lots of other ways the broker helps me but mostly they make it so much easier for me to control my life.
Is there anything you find hard or challenging about self-directing your own services?
It can be hard to find good staff sometimes. I’m really lucky that I have great staff right now. It’s also hard sometimes to check everyone’s time sheets so they can get paid on time. Tracking utilization is really hard, but my broker helps me with that. I guess the biggest challenge to self-direction is when a staff quits or gets sick, trying to find someone to fill in.
Overall, is self-direction worth it?
It’s definitely worth it. It takes some work and some coordination but because I am using self-direction I am living MY life, not someone else’s idea of what my life should be. I get to decide what I want to do and I get to go and do things when I want to – not when it fits in someone else’s schedule or idea of what my life should be. Everyone wants a life of their own – I’m happy that I’m leading mine!
Robert Zotynia also spoke about his experiences with self-direction this week at the Summer Leadership Institute hosted by the National Leadership Consortium on Developmental Disabilities.