Feature Issue on Self Direction

I’ve been living independently with the help of my caregivers, who I like to call my staff, for more than 25 years.

The Self-Determination Program has completely changed my life. I’m part of the program, and I work for the California’s Department of Developmental Services. We have 21 Regional Centers that provide services to individuals and families, and work is underway to standardize the program across the Regional Centers.

Before starting to self-direct my services, I reached some big goals, like moving out of my parents’ home, graduating from college, and working a part-time job. I had to commute five days a week for that job, which was a huge deal for me. But after 16 years, I felt stuck and worn out. The agency in charge of my care wasn’t meeting my needs, and I knew I wanted more.

The Self-Determination Program gave me the power to make my own decisions. Now I get to choose where I go, who helps me, how they help me, and how I plan my day. After four years in the program, I can say it’s been a life-changer.

Before this, I had over 200 different staff members coming in and out of my home over 20 years. It felt like my house was a revolving door or a Costco food court, with strangers constantly around. I had no control over my life, it felt like I was trying to put together a puzzle with missing pieces.

Even simple things, like going to a friend’s birthday party, were hard. If my staff needed to leave early to avoid overtime, I had no choice but to leave the party with them. I often felt like I had more freedom living with my parents than I did under an agency.

Now, thanks to self-direction, I have a team of ten staff members that I chose myself. My team and I make their schedules and always know who’s working when. If I need someone to stay longer, they can, because we budget for overtime in my spending plan. This has given me so much more flexibility.

I enjoy going on vacations to visit friends and family, explore new places, and try out new foods. Thanks to the flexibility of the program, I can plan these trips on my terms, making it easier to enjoy life and stay connected with the people I care about.

Self-direction does take effort. It’s like having a part-time job, but it’s worth it. Sadly, some people still think that those of us with disabilities can’t be in charge of our own lives. They see only our challenges and assume we can’t handle responsibility. They also think we can’t have real relationships, which isn’t true at all.

Self-direction has given me the freedom to live the life I want. It’s not just about hiring and firing staff; it’s about being in control, making my own choices, and living fully on my terms.