I have been talking to my care workers about the peculiar attitude of my “care” managers and the managers of a “care” facility and my care worker today was pissed because they had cancelled 30 minutes of my time. It was not because I didn’t need the care time but so that she could go a “difficult” client, one most other workers refuse to go to. She couldn’t understand why I had to pay with my time for someone else’s issues, but since the care agency is now making changes like this on a daily basis; and since the care agency’s policy of, “Well, what do you expect us to do?” I am not sure what to do. Seems simple to me, you say someone is coming 11:00-1:00 to help me shower, dress and have lunch. Only at 8:00 am you change that to 11:40-1:00 and don’t tell me. I mean, where I come from, that is crap service and I remember when I worked that if I just “decided” that I was showing up late and leaving early, that I got into shit, but apparently it is different when you are the “client.” They seem quite desperate to not use the word “customer.”
Anyway, this worker said she had been put in a building where the other workers were treating the people there in a terrible fashion, or ignoring them. She put in a complaint but was told, “It won’t go anywhere or change things as those workers are friends with X.” And with the meeting on Friday, I started by telling H., the care giving manager that I expected when I call with a complaint to find out, a) why it happened and where the breakdown occurred, b) what is being done to ensure the problem will not occur in the future and c) that I will be called to be informed of the change of policy or failsafe procedure that has been put into place. She looked at me like I had two heads.
Now I begin to remember where I have seen this type of behaviors before; it is between police and known criminals; or prison guards and inmates. Like when I made my last complaint, no action was taken nor was it even acknowledged until a independent observer verified (Linda in this case). I was told no action was to be immediately taken, basically, “Suck it up sunshine”, until Linda, again the outsider, the person outside the system, pushed the complaint further.
I don’t know why it is that we, the disabled, the sick and the dying are being treated with the same level of disdain, disregard and distrust as the police and prison guards treat criminals, but there we are. If a complaint is made, it is the covered up or ignored. Or as one my care giver said, “The only reason complaints are acted upon is if the ‘public’ come and go and see what is going on, like a care home. Here, in your home, I can do anything I want to you, and no one will ever investigate.”
Us, “Clients” (what a phrase for people who are dependant and often helpless, reliant on paid care), are largely seen as a hassle, as I believe EVERY care worker I have had has told me about being pulled from me for some “trouble” to be appeased. The management uses the Gen. Pop of clients as the flexible area where they can steal an hour or even a day to “put out a fire” or deal with a client who has refused all other care workers. Often, my workers will tell me that they have been pulled but refuse to go and tell the scheduler that they will go nowhere if not for me, or they wouldn’t be able to care for me regularly. It might not be a coincidence that my regular carers are all the ones who rarely associate with the management.
But now, the case manager was sent today to sell the CSIL grant which means that the entire VIHA team is off the hook, they don’t take care of me anymore; I take care of myself, hiring worker, paying all the government deductions, doing the tax. Only I am given less money to offer than the workers can get at the care giving agencies, and I will end up with less hours of care. On the other hand, I don’t have to wait five weeks for a shower. But most important to VIHA and Juan De Fuca Care Agency, I assume All liability.
I do not understand why the only way I can be secure, for the limited number of hours of care I am given, is to hire my OWN guards, my own staff who is loyal to me. Why, because VIHA has said, actually even laughed as the case manager did today that since Juan de Fuca is their employee, that maybe if they don’t do the work (like they did not today) they shouldn’t get paid. No, no, they and the care agency are on the same side, part of the whole process, it is I, the person needing care who is expendable. I guess the police think this way too, what difference is one criminal or another, there will always be more. And why they may cry “rights! Rights!”, well you know those seniors....sorry, I mean criminals....sorry, I mean dying people. They are so, well, they aren’t like us, are they? Little things set them off and they are SO unreasonable!