BLOG : It’s More Than Hiring Who You Want

I have been a Concepts consumer for nearly 22 years. I was a client of a traditional home care agency for 13 long and disappointing years.

I found out about Concepts through a neighbor and friend. He never spoke about or shared what it was like being self-directing. I observed him and his Personal Assistants (PAs) interacting and working together. I don’t remember when or how I finally got the answers but, I joined Disabled In Action and met other disabled people who had Concepts. They helped and led me to the best thing I could ever have dreamed about. Hence, fast forward to today… Nearly 22 years later.

I joined Concepts a year before I entered graduate school. Full time, 2 years of work, study, etc. I would never be able to do it with a traditional agency. My home care schedule then was 4 hours per day. So, in the late afternoon and early evenings I received my home care. And I graduated 2 years later. In other words, I had the right to receive help when I needed it; not when some agency decided I would get it.

Being self-directing is a huge responsibility and work. The “selling point” is you get to choose who works for you. It’s way more than that. You have to create schedules, shifts, hours, etc. Then there is time off/vacations of PA’s, finding fill ins. People have to come to my home for interviews, and filling out paperwork. Recruiting requires advertising which is expensive and costs money. After all this, there is what I call the “too comfortable stage” when some PA’s show up when they want or not show up at all. Time to fire (which can be difficult) and find another PA. Then there is the time sheet to be mailed at the end of the week, checking pay and hours to make sure PA is paid for hours they worked.

Rules come and go. Things are tried or just forgotten. The years go on and we get older. What I am trying to say here is this: Being self-directing is a job for which we do not receive pay or financial compensation. It is work which carries a lot of responsibility, time and unpaid work. My point is not to scare new people. I wrote this to emphasize that hiring who you want is not a definition or selling point of being a Concepts of Independence consumer. It is all the things I mention in this piece plus more. I feel it requires being honest to yourself and your needs. Not everyone can do all the tasks I mention in this piece either.

Again, I do not want or intend to turn people off and away from being self-directing. It is a non-paying job and not for everyone. Be honest to friends and others who ask you about it. It is way more than “hiring who you want”.

 Written by Caren Potoker

Note: While Concepts of Independence does not provide guidelines or advice on hiring, training, supervising and/or terminating Personal Assistants, we are pleased that many of our Consumers are happy to offer such advice from their own experiences. They are peer mentors, and their advice is their own to offer, and does not reflect the policies or guidelines of Concepts of Independence.