Redefining Disability Challenge – Question 15

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…..



19 thoughts on “Redefining Disability Challenge – Question 15

  1. yep, this is my life. I keep wondering at what point I’m going to burn out my sister’s willingness to drive an hour each way to help me.


    • People who live it understand. I usually get the well meaning, “But surely there must be something you can do!”

      Yes – there is. I can grow my network of support and hope they will come through when I need them. I can recruit and hire more staff and hope they stick around. When Wal-Mart or fast food jobs are paying just as much or more, it is challenging to offer a competitive alternative work environment.

      Liked by 1 person

  2. This is so off the radar for so many. Perhaps they are choosing to ignore, instead. I feel terrible that this has to happen for so many in need of assistance to maintain quality of life. Wish I was closer to help out more. Is there anything that can be done politically to address the issue? Have you ever tried to hire through an agency? Am I showing my ignorance of the situation?
    Thinking positively for all of you who face this challenge daily


    • When things are good, life is SO good. And then when things start to crash down, everything falls apart. If we were able to offer a competitive wage to our Personal Assistants, that would help us recruit and retain a better work force. But the rates are set by the government so change is slow. I am involved with efforts to improve the reimbursement for CDPA but we are just one small voice of many who approach the legislators.

      I have never used an agency. If an agency is unable to find staff to work one of my shifts, I would still be struggling to get someone here to help me. If I’m going to have to do the work anyway, I might as well at least take full control and manage the program. And I have yet to find an agency that will guarantee me coverage every weekday at 6:00 AM. It’s not an ignorant question to ask at all.


  3. Wow. What a task being the CEO of such a vast undertaking…way too much for one person. I do hope things ease up for you for a bit at least. Wish I were close enough to help out over there but am sending virtual hug to at least let you know I care!


  4. thats terrible. In philippines, you don’t need PA or caregiver, relatives will take care of you or someone professional for a less amount of money and u wont be needing 12 PA, i believe 2 is enough


    • I understand the cultural differences and care is very different in countries outside of the United States. I do not have close family nearby who are able to provide all of the hours I require. And 2 PAs would never be enough for me to maintain the life I lead. I know people in the United States who manage with one or two PAs but they do not work a full time job and they are not as active as I am. Each culture approaches disability in its own way, which is helpful for everyone.

      Liked by 1 person

  5. You have once again opened my eyes to how much I take for granted each day. I would imagine that the turnover rate for PAs is rather high. It has to be disconcerting and unnerving having to find new people to come in and learn your routines. I hope your regular crew is back in action soon, and that you get some relief from the stress and uncertainty.


    • The turnover rate is high, and I have been fortunate to have maintained constant adequate staffing for about 6-7 months. I always get a bit leery when things are too good for any length of time. Then, when one goes, everything seems to fall apart.

      Thankfully – I have hired a woman who is wonderful and she starts on Monday. And one of my regulars will be back from vacation next week. This too shall pass….


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