Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fifteenth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.
Here is this week’s question:
What are the biggest challenges that you face in regard to disability?
One of the biggest challenges I face related to my disability is currently wreaking havoc on my personal life. So I thought I’d use today’s challenge to allow myself to rant about the difficulties involved with finding, and keeping, good staff.
I live independently in the community, in my own apartment, because I have access to home health care. I use Consumer Directed Personal Assistance (CDPA) which means I am responsible for recruiting, hiring, training, managing/supervising and (if necessary) terminating my Personal Assistant (PA) staff. Or, as I often say as part of my “paid schtick” while working, I am the CEO of me and I get to handle personnel.
CDPA is an alternative to the medical model of home care. Rather than a nursing agency sending staff to my house, I have control of who enters my house, what tasks they perform, when they work, and how the job is done. Without access to CDPA and the PAs who work for me, I would have no choice but to live in an institutional setting or rely on the regulations imposed by a nursing agency.
Instead, I manage a staff of six primary PAs and six back-up PAs. These women provide the forty nine hours of assistance I require each week to maintain my active schedule.
In essence, I work two full time jobs. There’s the paid gig I referred to before – forty hours per week for the non-profit organization that employs me. Then there are the forty nine hours per week I spend being the CEO of me.
Only for the past month I have spent at least ten additional hours each week recruiting, interviewing and training new PA staff. For many reasons (maternity leave, injury, family illness and death to name a few) my PA staff are dropping like flies. Right now, I only have five of my twelve local PA staff available to work.
I am extremely short staffed for my life, which means I am living in a constant state of high stress. Because being short staffed means:
- I don’t know who will help me go to the bathroom after I get out of work tonight.
- I don’t know who will help me go to bed tonight or tomorrow night.
- I don’t know who will do my laundry and I only have two more pairs of clean underwear.
- I don’t know if I will be able to cook the chicken in my refrigerator before it goes bad since I don’t know who is working for the next two nights.
- I don’t know how I will get out of bed if my one remaining weekday morning PA has an accident or illness because my back-up morning PA is out with an injury.
- I can’t even think about the weekend because I have to get through the work week.
OK, so I may be acting a bit dramatic. I have friends and family. Someone will come to help me go to the bathroom and someone will help me go to bed. I always find “someone.”
But the point is, right now, I don’t know who those “someones” will be. And it will take many “someones” so I don’t burn out the goodwill of the friends and family I have been calling on for the past month. And not knowing means I have to take time out of my life to plan. Which means I am not as attentive or productive at work, and I am not available for the volunteer service I enjoy. It also means every little annoyance bothers me ten times more than it would – like just last night when I cried because the new PA who has worked for me for two weeks was a no call, no show, and I just didn’t have the energy to find assistance at the last minute once again.
I could keep writing, but I need to go conduct phone interviews with two more potential PAs. With any luck, they will be available for some of the shifts I have open.
And I need to go find someone who will help me pee and go to bed tonight.
In the meantime, I’m hiring – if anyone has any good candidates to send my way…..