We're still trying to figure out why the preliminary decision to give me the funding I need to live by myself was not accepted in the final decison. As it is now, I'm short 6 aide/hours a day, which is not good. Since my bladder cancer, I have to use the bathroom several times a day, so I need someone with me virtually all the time. Otherwise, I'd absolutely prefer 6 hours a day on my own.
There is the possibility that I'm caught in a bureaucratic mess. Simplified, we are dealing with three piles of money I could access-- except if I draw from one pile, I can't necessarily draw from one of the others. Each pile is administered by its own rules for specific groups. The idea being, no doubt, to maintain control over those monies by closely defining how they may be used. Guarding against misuse of taxpayer's money is a good thing, of course, and reform efforts generally try to limit the power of bureaucrats by writing tight rules.
Individuals, and the needs of individuals, however, don't fit in tight little boxes. A better reform approach may be to put the money in a larger pool, write more general rules governing how it can be used, and allow administrators to use their judgement and experience. They would be monitored, of course, by legislativve oversight committees, the governor's staff, the press, advocacy groups, the people directly involved, and eventually, if necessary, the courts. Flexibility is critical when dealing with human needs.
