Observations From Below: It Was the Best of Times, It Was the Worst of Times

I’m about to lose another personal care assistant (pca). On one level, this sucks because I have to start fresh with a new person coming into my life. I’ll have to train them and build rapport, trust and a relationship. On another level, I am very proud of myself. I’ve done it again. I always manage to leave people in a better place than I found them.

My college pcas have moved on to very promising professional careers. My current pca, who is actually scribing this, is about to jump back into higher education, which is how I first met her. Last week. I blogged about one aspect of the system that I think is a challenge. Today, I want to talk about another missed opportunity.

For the last eighteen months, I’ve had an interesting experience of participating in a program called Advancing Strong Leadership in Intellectual/Development (ASLID), a leadership development program for young professionals in the developmental disabilities field in NC. There are two reasons why it is fascinating for me to participate in this. One is funny and simple, I am technically, not a professional, yet. The other is more interesting, that is that I’m really the only one with a developmental disability (DD) talking to people. We spend a lot of time talking about how to improve the lives of people with DD. I’ve noticed a missed opportunity for this system to improve.

Not to criticize the great leaders that I’ve been able to speak with, but we seem to have forgotten that the pca and person with a disability (pwd) is a reciprocal relationship. We’ve learned a lot about person centered planning and asking ourselves what is important to the pwd and what is important for the pwd. I’m not saying that should not be the ultimate goal, but in order to get there I think we have to address the other end of the equation, too.

I’ve had a lot of pcas and I’ve mentioned before, that they never really leave me, they just move into a natural support role and sometimes jump back and other times not really. I think one reason I’ve had luck with that is I really take time to get to know my pca and support their goals. (And because I’m adorable.)

I try not to make the whole relationship about me. I support a lot of their interests. I’ve been to softball games, Christian-related things and I’ve been to belly dancing shows. Not only to I enjoy these things, but it helps to build a strong relationship, if I show that I am interested in whatever their thing is. (And, surprisingly, I’m still single.)

Once I have gotten to explore their passion, thus far, I’ve always been able to professionally help them in some way. One of them gives me a lot of credit for why she became a physical therapist, for example. Because I am in their lives, I am able to reach out to them and keep up with them and if I need something, I can come back to them for help.

Of course, it is hard to do that with everyone and I should do better, but I think I know the key things that are going on in their lives. I’ve been to one of their weddings and another one is coming up very soon.

There is a high turnover rate in the pca field. North Carolina is already predicting a shortage of caregivers and Minnesota sites as high as a 60% turnover rate. People with disabilities may not have power over the wages of pcas, as that is governed by the government. We do have control of our attitudes towards them.

It should not be all about our needs and our wants. I think if we all took time to also care about our pcas, and their dreams and interests, like I have, that retention problem might improve. Money pays a role in retention, but it isn’t the only thing. It is also about being valued and doing work that matters. I’m troubled by a stereotype of pwd. Some say we’re narcissistic.

I’m calling for all of us to change that stereotype.I’ve just added a question to my pca interview questions. I am going to ask my potential candidates what their future goals are and more importantly, what I can do to help them. I’m also asking them what things they are interested in. We can all add these to our questions. I think we can also all take time to explore their interests with them. (Many of the things I’ve explored involved beautiful women, an added bonus.)

I have to go get ready to change someone else’s life now and let them change mine.

That’s how I roll.