Letter to County Executive Concerning Cutting Center for Disabilitiy Rights

County Executive Brooks,

I am sitting outside your office, on the ground in a sleeping bag. My friends Sue and Debbie and Shelley are sitting up because getting down on the ground is nearly impossible. It's 3 a.m.We aren't out here on a whim. The decision you have made to terminate the contract with the vendor for their aide service is of much greater concern than the loss of a few nights of sleep.

Do you know what this decision means? I think you can't possibly, or you never would have made it. 80% of people who qualify for consumer-directed personal assistance (CDPAP) use the Center for Disability Rights as their vendor of choice. 100% of those people were approved as eligible for this program by theCounty of Monroe.

Now this consumer-directed program has made a huge difference in my friends' lives. Because they can choose, hire, train, and fire their aides, they have a sense of normalcy and control over their lives that is not possible to obtain with traditional aide service. I know this. Sue and I have been friends for 20 years, and I remember what Sue's days were like before consumer directed care.

If an aide is chronically late, making Sue late to work, she is no longer stuck with this person (as she would have been under a traditional aide agency) because that traditional agency "can't find anyone else". If an aide talks nonstop, is rough or rude, or tries to tell her that her disability is a gift from God (all while drying her naked body after showering) she needn't grit her teeth and bear it, and then make call after call to a traditional agency which has it's own timetable for disciplining, investigating, and retraining, reassigning or terminating employees.

Are you starting to get it, how precious is this freedom that most of us take for granted? The right to wipe one's butt in peace? I am not trying to be crude. This is simply the way it is.

And yet, it is better than it used to be. Because of the Consumer-Directed Personal Aide Program, Sue has reliable aides who know and respect her, people she chose and trained herself. She can wake up in the morning knowing that a ringing phone is not an agency telling her she has no coverage for that day. She can come home after a rough day and know that her aide will be someone who knows and cares about her, and that simply going to bed is not going to be a hassle. Dinner will be eaten, as will be breakfast. And if she dismisses her aide early this night, she doesn't have to explain herself to anyone.

10 days. That is what you have given Sue and Shelley and Debbie (and 300 other Monroe County residents) to try to find new people to come into their homes and their lives and do very intimate personal care. 10 days (alternatively) to ask their aides to register with a new agency. That process takes more than ten days, so interim aides will be required. How would you like someone new to, well, wipe your butt every night?

And what of those agencies? Those five other agencies to which Sue is supposed to be able to smoothly transfer her aides without significant disruption to her life and well-being?

They don't have a good reputation within the disability community. To most agencies in the CDPAP program, "Consumer-Directed" is just a name. Again, I will remind you that 80% of CDPAP clients choose CDR as their vendor of choice. Of those 5 alternative agencies, two of them are out of town. Out of state, to be precise. They don't know Sue or her aides. She fears turning over such basic, intimate aspects of her life to some new bureaucracy contracted by the County to provide Consumer-Directed Aide Service, but which may in fact behave more like a traditional agency. She and Debbie and Shelley know that when sudden changes like this are made without he input of the disability community, they results are rarely positive.

There is a reason why so many people choose CDR. It isn't, by the way, because CDR is a not-for-profit, which charges the County significantly less per hour than other agencies, although this is a fact. Sue and Shelley and Debbie and Dan and Anita and the other people sleeping here on the sidewalk with me tonight choose CDR because they have seen the other side of aide service and it is not pretty.

Ms. Brooks, you've made a mistake. A mistake that will have a huge impact on people's lives. Judging from the number of souls willing to sleep on the street tonight, it already has. This isn't about 10 days notice. It isn't about a bureaucratic change and simple preference. This is an issue of basic human dignity and freedom. Monroe County can do better. Barbara Deitz