{Visual description: Man on phone at computer desk is surrounded by papers and a question mark floating over his head.}
Most of us with disabilities are all too familiar with the fact that putting any bureacracy in charge of our needs turns into disaster.
It's inevitable, to some degree, that bureaucracies exist. But the problem is that it surrounds us. It can be a full time job dealing with the very structure that's set up to help. This includes programs like Medicaid and Medicare, but also extends to social service agencies through which we get aides and hands on help, such as volunteers.
This morning I received a call from an agency which has given me no help in several years. Why? Because every time I ask for help I'm told that they either aren't available or can't assist me with what I'm asking for.
Yet I was told they would be making a visit to me. I asked why. Part of this is out of exasperation, because it's the third agency in the past week that has done this - 3 agencies which provide no help, 3 social worker types who need to visit me.
"I know you work," the woman replied. "But - you have to do this."
"Why?" I asked. I pointed out that I was not getting any help from them and, in fact, as memory served me, had not in years.
She sounded flustered. "That's not the point. You're on our list. I can take you off our list and then you won't need to have a visit."
I explained that I didn't mind being on the list, nor was I asking to be taken off, I was just pointing out that I saw no need for a visit if they weren't providing services - especially since my circumstances hadn't changed.
"If you don't want a visit, I have to take you off the list," she said.
So I'm off the list - basically because I just am too busy trying to keep body and soul together to keep up with the bureaucratic requirements of being on lists for places that offer no help.
It doesn't matter anyhow if I'm off the list because they don't give me any services.
How does this happen? This "Kafka-esque" type result can only happen when communication is one sided. When the agencies offering help use a "trickle down" model of services and don't allow consumer input, then the services are going to be useless unless you happen to need what they think you need given to you in the way they think you need it. The other problem is that many agencies have designed services as a one size fits all for seniors and disabled and that just doesn't work at all for me.
I'm often lectured by social worker types as to how this could all be solved if I would stop working. But I'm just persnickety that way. I don't see why I should quit working just to have access to a service - when the whole point is to save energy so I can work.
May I just say "Help!" Or perhaps... never mind...
7 comments:
I work in the bureaucracy and see all the problems. Glad you're speaking up because that's part of the solution. We can do better.
The system is broken the way it is. You're right that there's not enough input from us and that's ridiculous. The other problem is that many people feel disempowered and settle for poor or no services. As long as paychecks get written, many don't care. The money gets spent but the help isn't being given.
You won't put this up but I am going to speak my mind. You people all have a sense of entitlement. They should put you all in nursing homes to shut you up. I work with disabled people in a home and we know how to handle your type. Face what you really are and stop asking for what everyone else has. No, you're not as good as everyone else and that's the truth of it and that's why you have to take what you can get. And be happy about it. So you think I'm wrong? Fine. But lots of people agree with me.
Well, that last comment is certainly an interesting one! I sincerely hope she or he is able to find a different job: it is sad to think that there is anyone in the world whose well-being depends on someone who thinks shutting them up or "handling" them is appropriate. I wonder what my pre-nursing students will make of this in class?
It's amazing how someone can think, "you're not as good as everyone else" until the day that an illness or accident or old age reduces their physical abilities but not their soul or their personality. As a social hospital social worker, the most common thing I heard (from my cancer patients) was, "Why does everyone act like I'm a nobody? Why don't I matter anymore?" Some people can catch on to that dynamic through empathy with others, and the rest have to wait until they experience it for themselves.
When I worked as a social worker, I found that the mismatch between what a system needed in order to keep good records and maintain accountability - and what clients needed to lead their lives - was pretty bad. I suspect it's worse. Wouldn't it be great if whatever validation that agency wanted could have been given to them by one of the people who IS providing care? Save hassle of a visit, the cost to them too, and yet not just leave someone "on the list" without info.
Thanks everyone for your comments. Comment moderation is always an interesting process - I definitely turn down comments with profanity or perhaps ones that attack other commenters - and then there are grey lines sometimes. However I don't turn down comments simply because I disagree with them or people disagree with me- even strongly sometimes.
Why? Because there are times when some comments "make my point" very well about the way people with disabilities are treated -or mistreated- better than I ever could in a post.
I do feel that our bureaucracy can be improved with feedback and some rolling up of sleeves and commitment. There are many caring people who are just as frustrated as pwd. How frustrating to work there and know , as Sr. Edith points out,about the mismatch between what the system needs and what the clients need. This in itself can cause burnout among staff in a bureaucracy - the other side of the coin!
I think that what the anonymous commenter says, makes some sense. Not as in that it is true or that I agree with it, but this belief - at least, in less extreme forms -is pretty common in the disability service field. I have seen it more often than I would like that professionals have a "hey, we are the professional so we know what's best for you and you are the cient so you should shut up" attitude. Some people don't mean to, but still send that message. Like, when I ha donly been living in my current place for a few weeks, I was practising a route with a staff member (I'm blind so can't find my way without first being taught routes). This staff folk was telling me that I should stand still to listen for cars when crossing streets. Once, we were crossing a street and she didn't stand still to look for cars, so I told her she should cauxse she was telling me to. Then, she got into a whole fussing of how she was there to help me and I was in a "support position" and she being able to see cars from a mile (as if that's necessary), etc. I've been a fairly good traveller for a few years, so I felt it was sending quite a patronizing message to take my skills into question.
I also want to comment on the statement about physical disabiliteis and still having one's soul etc. As a person who needs soem support for behavioural reasons and who is pretty active in the advocacy by people with developmental disabilities, I want to emphasize that people with all kinds of disabilities should have the right to make their own decisions about care/support. It may be more difficult for people with learning difficulties, developmental disabilities, etc. to assess their own support needs (I find it kind of hard to assess mine), but it doesn't mean these peopel should be left to the "we'll handle you if you just shut up" attitude.
Astrid, thanks for your comments. I particularly like what you emphasized at the end - that " people with all kinds of disabilities should have the right to make their own decisions about care/support". It may be more difficult but that's no justification for people to just take over. There's a difference between "helping someone" and "controlling someone" and it can deny someone their personhood. I see this too often and it's a huge issue.
Post a Comment