Many of you may know that I am now in the interesting phase of entering the real world, let alone now finally dealing with the systems in a city where I have completed my undergraduate career. For a person who has needed assistance from other people for most of my life, you would think I would have some idea how to do this process or at least how to get started. In the past, I have always been respected as a crucial member of a team that planned my care as soon as and possibly even before it was appropriate. As such, I am used to meeting with and coordinating with many different people so that I can go about my day as I need to. While I realize that this might be somewhat of a unique situation, I still amazed at the amount of stereotyping that goes into creating policies for people like myself, who wish to self direct their day but need assistance doing so. At this point I am trying to take the steps to have the most independent option possible but there are a lot of things that I found out do not go without saying in terms of how people interact with me every day.
- None of my aides or caregivers need to be my parent, as much as they want to be.
- Even if someone does not agree with a decision that a disabled person is making, it doesn't mean that it's not their choice.
- While I realize there may be limitations on payment and billing of certain assistance services, this does not mean I cannot come and go as I please. My community involvement should not be restricted in any way because of the help I need. (I know there are people for whom this is not the case but if it is relatively simple for the person to leave their home, there's no reason why they should be restricted from doing so.)
- Somebody assisting another person doesn't need to add commentary on every individual task unless it's asked for.
- I have the right and legal authority to be a part of planning my own support. I should be treated as if I know what's best for me. I don't have a background in law but I know there are many of us who learn regulations out of necessity.
- I am a pretty laid back person in general, and I am pretty easy to get along with, so people are often surprised when I stand up for myself in terms of what I need. This needs to be commonplace and not unexpected.
- If I say that a solution does not work for me, people need to listen to that and respect that.
I don't understand why consumer directed support is not a universal thing and why it is so hard to set up. You'd think it would be the easiest thing to access as an alternative to a nursing facility. But somehow the people who know what they're doing always end up working for large companies that don't acually have a good reputation for client services, instead of allowing the client access to a large network of people with the credentials they need to help them. While I think it should definitely be considered as an option, it is definitely not the only option to go through an outside entity for management support as my personal experience and the experiences of many of my friends can attest to. Not only is the quality of client services severely impacted, but also the quality of the environment for the people who work there. Don't get me wrong, I've had some fantastic experiences, but largely I find that if you don't live with some type of disability you don't understand what it's like if somebody
forgets about you one day, or says there's nothing they can do for you. Now, imagine what that's like every day on and off for a month. This is not your Excel spreadsheet, these are our lives.
....and it's time we took them back!