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.
