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…
Copyright 2007 Ruth Harrigan