Monday, February 04, 2008

US versus Them

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!


Katrin said...

"Now I begin to remember where I have seen this type of behaviors before;"

And psychiatric inpatient wards. As don't you know, every one there is a criminal too!

Anytime I was there, I was always pretty 'compliant', except when I wasn't, and then was told that that was my problem. Sure thing, absolutely, being 'non compliant' is my problem. Drug reactions are just me purposfully being 'non compliant'. Except they never actually said out loud 'non complaint' just wrote it in my chart.

Medical folk, in any field, are an odd class.

Lene Andersen said...

I don't quite agree with the criminals analogy - having worked in the correctional field, albeit not in a prison, this feels different and I'm pretty sure it's not because I'm on the receiving end of the "them" treatment. To me, it looks more like children. Disability - especially disability that requires using a wheelchair - infantilizes (is that the right word?). I don't know if it's the sitting down that places us at the level of a child or the fact that we need assistance in doing things other adults can do themselves, but if you've ever had someone bend at the waist, place their hands on their knees and talk to you like you're 5, you know how a kid feels. Or a waiter asking your friend what you'd like. Or a salesclerk asking the person you're with what size you are. It's as if they don't believe a person with a disability has the mental capacity to decide and communicate their wishes. Or be an accurate witness. And I only really see that in the treatment of children (and the elderly). Criminals don't get patted on the head - they may not have much credibility, either, but it's not that benign wall that feels like punching Jell-O.

if that makes any sense...

Hermes said...

How these so called Managers sleep at night is beyond me. They must have mothers, brothers, cousins etc. but seem unable to relate to the people they are meant to be serving.

cheryl g. said...

I think the bureaucracy adds to the problem. Acting to fix the problem means more paperwork which is to be avoided. There's also the bureacratic mind set of "If the problems are fixed they will need less case managers and I'll be out of a job..."

Probably the only way that things will change is if there were say a big consumer expose thing in the news but I won't be holding my breath waiting for it.

Lisa Harney said...

While the specifics may vary, I do think that there is something to what Elizabeth says about treating her like a prisoner - or perhaps, as someone untrustworthy who needs to be controlled so she can do no wrong.

Also, as katrin points out, psychiatric wards tend to be very prisonlike. Amanda Baggs has written reams on the topic as well. I've read a lot of accounts of home care workers/staff - or more often, management - who carry that attitude with them.

em said...

The thing is, that I wish you could get this writing out to the larger society, where it might do some good, and of course that is what I hope, but it also might humiliate some totally jerkwads who need humiliation and that wouldn't be a bad outcome either. Do these people know that you blog this stuff? Would it help if I call a bunch of local news agencies? (Local to you, not me.)

You have great documentation here, and I would love to see it see a large audience.