Dec 20 2008
PCA Programs…
I am proud of the fact that I run my own personal care assistance program. I decide who helps me and what hours they work, I train people and if needed fire them. I decide what they do when they’re here. I manage the 91.5 day hours I get during the daytime per week to be used between the hours of 8 AM and midnight. That works out 13 a day on average, plus I receive overnight support of three hours per night. The person stays over with me for eight hours but only gets paid for 3, as I am supposedly sleeping and won’t need their help as much. I don’t like this system as I tend to be a night owl and require work-related help like typing during the hours when the muse is awake. I’m a writer and have learned the muse will be active when she wants to be. Not necessarily when I want her to be.
Ideally, I would like the state just to hand me the money for my care. I am perfectly capable of determining how much money people get per hour; I would totally raise the night rate. Day people get a lot of little breaks when I don’t need help for a half an hour or so. Night people never get more the 2 hours of sleep in a row.
All across the country, disabled people are fighting for more control over their government funded services. We deserve it. We can manage own lives. The only reason we don’t have it is because of ableist (discrimination towards disabled people) bias. I demand the right to determine factors that effect my life, whether I pay for it or whether the government does.
