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Dealing with Personal Care
by David Chapple
Many people with disabilities do
not require any attendant care. Others just need a little attendant care
to help them to more independent. However, for people with a severe disability,
like me, we have to rely on attendant care for almost everything we do.
This by itself is frustrating, but having to use a communication device
complicates things even more. In this month’s column I am going
to write about unpleasant situations I have been in dealing with Personal
Care Attendants (PCA’s) while using a communication device. In addition,
I will discuss the techniques I developed to avoid them again.
One of the most horrifying things that happened to me, unfortunately more than once, was my morning PCA did not come and I was stuck in bed. I am more or less helpless when I am in bed, because I do not have access to my communication device and I am not able to transfer myself. So the only way for me to communicate with the outside world is for me to push my emergency response button. Since I can not talk to the emergency operators I am hoping they will call somebody like my roommate or a relative because they would know who to call to come to help me or they will come themselves. However, I have had some real communication break downs when the operator can not get a hold of anybody and decides to call the paramedics.
On one particular morning I woke up and looked at the
clock, it was 9:30 AM and the house was quiet. My roommate, Mike, usually
left at 7:30 AM and my PCA usually came at 8:00 AM. I knew the 
house
being quiet was not a good thing! I started to yell thinking the PCA (this
would have been her first morning alone with me after training) just didn’t
wake me up when she arrived. After about five minutes of yelling I figured
out she was not there. Like I said before, the only way I can get a hold
of anybody while I am in bed is pushing my emergency button, so I did.
Of course the operator didn’t get a response from me, but she said
she would call Mike. I was thinking: Okay good, he will tell the operator
I was fine and call the PCA agency to send somebody else. About ten minutes
went by and the operator came back on the intercom saying Mike wasn’t
answering his cell phone and she would try my sister. Well, another ten
minutes went by and the operator came on again saying she had the same
result with my sister. She had no other choice but to call the paramedics.
Fortunately the emergency operator told the paramedics
how to get into my house so they would
not need to break a window or anything like that. They found me in my
bed - fully conscious of course. They figured out I was not ill, but could
not speak. They knew I should not be alone and somehow found the notebook
from the PCA agency that was supplying my care. A paramedic called the
agency saying I needed help. Since that incident I’ve printed an
instruction sheet and taped it on my bedroom mirror so the paramedics
will know what to do and who to call. Thankfully the paramedics have not
needed to come again.
Another thing I have to deal with from time to time is when the agency sends a PCA who never has been to my house before. This is not as big of an issue when it is my afternoon shift. I am in my wheelchair and have my communication device in front of me so I can tell the person what to do and how to do it. However, when I am in bed I do not have my communication device and I can not tell this person who I never met before anything. They are not going to know how to transfer me, how my arms bend to dress me, or how to set up my communication device so I can finally talk to the person. This can be both frustrating and scary, because my communication is limited to yes/no questions and I don’t know if this person is going to hurt me or what.
To prevent this from happening I have asked the agencies that work with not to send a PCA unless they have been trained with me prior to their first visit. This may solve the problem of having clueless people taking care of me. However, this does open some other cans of worms. First of all, this plan of action is useless unless the agency has somebody to send who is trained when my regular aide calls off. I try to make the aide and the agency very much aware that they need to call Mike and me BEFORE he leaves for work. This way we can deal with my morning care. Unfortunately, this doesn’t happen every time.
Medicaid funding policies are another significant issue that influences the quality of attendant care! Medicaid does not pay for two PCAs being with a person at the same time! Certain agencies do not like absorbing the cost of the second aide who is being trained. In this situation either Mike (or my parents or sister) needs to take time out of their work schedule to train the new PCA – without pay! If two PCAs come, then one of them does not get paid. Medicaid and other sources of funding need to reform policies for attendant care that impact our health, safety, and quality of life. That is a discussion for another column and forum that I hope you will join in supporting.
I can go on about other issues and experiences I have had with attendant care, but this column doesn’t permit that much space. If you would like to learn more about my strategies dealing with PCAs, feel free to e-mail me at AACConsumerNet@aacinstitute.org. Please, consider sharing some of your strategies with me and perhaps they will become a part of a future column.
Your feedback is always valued. AACConsumerNet@aacinstitute.org.
