Just A Few Questions

What is it to be disabled? Disability is a label that society puts on you, but this label has preconceived notions that come with it. This label often causes others to view the one with a disability as something less than human. However, there is more to disability than just a label. A recent situation that has come up regarding my disability has inspired me to write this blog.

            As many of you know, I have Cerebral Palsy. Due to the Cerebral Palsy, I require aide care. In a book that I am in the process of publishing, I describe my journey through grad school and the aide care system. However, the aide care system needs a wake-up call. Recently, I have switched to an agency model of care. I am aware that this is a different type of care system, in that I do not hire my employees anymore. However, lately, I feel like a pawn in the aide care system chess game.

            When I accepted this agency to take over my care management, I was made specific promises. Before I get into them, I must say that I am aware of my extreme reliance on other people. That being said, the aide care agency promised me that I would have a consistent team of care providers who were familiar with somebody with my level of care needs. That has not been the case. The exact opposite has occurred. I feel like I am in that annoying little shell game; you see people play on the boardwalk. You never know where the marble is going to be. I never know who will end up at my house, but that is not the worst part of it, and that is not what inspired me to write this blog. That is just a little backstory.

            What burns me up is an incident that occurred yesterday. They sent me an individual who I have had issues with in the past. This individual is supposedly a certified CAN, but she did not act like it. She was very uncomfortable with the job's duties, such as taking me to the bathroom and whipping my butt. Even something as simple as feeding me was a problem. I have reported this to the agency before but yesterday was extremely bad. To top it all off, the agency is a "no lift" agency. This means that their employees are not allowed to lift me, which is fine, because I have what is known as a Hoyer lift.  The lift allows the user to hook me up with a sling and then pump me up into the air to lift me in the chair to my bed or wherever. How can an agency be a no lift agency and not train their employees to use the required equipment? Just a thought.

            When I bring this point up to the agency, they reply that all employees are trained on the equipment. Cleary yesterday was an example that they were not. This brings up a more significant issue in the aide care game. Why do agencies false advertise to get consumers in their payroll?  I am used to aides switching constantly, but it makes me wonder about people nowadays when numerous people promised me.  Why make a promise you have no intention of keeping or unable to keep to make yourself sound better? Good intentions are great, but they don't get you very far in the aide care game. It is time to stop dealing with false promises but deals in realities. There should be a better screening process for aide selection and agencies, mine and others should not promise things they cannot or will not deliver.