Keith, how long have you been receiving CSLA services? For about one year.
Why did you want or need supportive living services? What were you doing before? I was living in Fairfield, which isn't a very good town for wheelchairs. I lived there for two and a half years with a roommate attendant in his house. The house wasn't wheelchair accessable so the only way I got out was for my roommate to carry me out. Since he worked swing shift and then slept a lot during the day, I was alone most of the time. Basically I was a prisoner of that house for two and a half years. I had a $15,000 wheelchair but I couldn't use it. California Children's Services bought it for me but then I turned 21, and they dropped me before the chair could get adjusted for my needs. It just sat there while I layed on the floor most of the time. I didn't get much support and I didn't feel too safe. My roommate had a mental disability which I found out about after I moved in. It was a hard time.
How are things different now? I have better support staff. My live-in attendant is a friend who I knew in Fairfield. She and her two-year-old live with me so it's kind of like a family. CSLA provides support hours in addition to the maximum that IHSS allows so I can get what I really need. With CSLA funding I was able to get my wheelchair set up right so I can sit upright. It also paid for my automatic door opener which I can operate by just pushing a button on this thing on my wrist. I spend a lot of time now going out and doing things. I have Lifeline services in case of any emergency; even my smoke alarm is hooked into it. CSLA also arranged for Home Health Care to be on-call in case none of my regular attendants or friends can come when I need help, but I have never had to use it. So I feel a lot safer and a lot more independent.
Do you have a circle of support? No, not a formal one. I'm pretty independent and I have people that care about me. People come over to see me and I go out when I want.
What is your supported living service agency doing for you now? I don't need much help with things like money or bills. They help me with finding good attendants and getting equipment and advocacy. They kind of keep an eye on me to make sure everything is going okay.
What do you think would have happened to you without supportive living services? I would have ended up in a nursing home or something.
What advice would you give to someone thinking about doing what you've done? Go for it. Give it all you can. Don't give up.
Imagine That! is a quarterly newsletter about supported living published by Allen, Shea & Associates, 1040 Main Street, Suite 200 B, Napa, CA 94559, (707) 258-1326 under contract with the California Department of Development Services HD390061.