Behind closed doors: when a service does us a disservice

When all is said and done about funding difficulties for personal care assistants, I find that there are still inherent difficulties in the arrangement as it is set up in many areas.

We can all agree that the pay scale is horrendously low for personal care assistants. These folks are being asked to perform a multitude of tasks that vary from day to day. Some of the tasks are distasteful, boring or time consuming. It is, in some respects, a job many people would not want. And nothing I write from here on in changes any of those injustices from the pca's point of view. Like many other people with disabilities, I can understand that these problems add to high turnover and poor attitude toward the job.

As a person with a disability, however, my perspective is different. I feel that even if we solved some of these problems, the way these services are being delivered is a fundamental part of the problem. I cannot tell you how often I have worked with a personal care assistant (and make no mistake about it - having one is work) and found it a frustrating experience. And this happens even when the pca has demanded - and received- extra compensation from me in order to even show up. The money is not the entire issue. Because of the way society views people with disabilities, we need to revamp the way these services are provided. This is because the current delivery of services is based on outdated beliefs that most people with disabilities are passive recipients of services.

Why do I say this? Because, in my past experience*, the majority of pca's do not treat their job as a job. They do not show up on time. They are not accountable for what they do - or do not do. This means I have to bring in another person to finish or do their work. They call their friends and family, doctors, car mechanics, etc. during the short hours I am allotted while my time is tied up waiting for them to help me. Some of them bring food and try to squeeze in a half hour of eating during my allotted hours.

This litany of rants is not to condemn pca's - although it may be taken that way . It's to highlight the fact that, along with adjusting the pay scale for pca's, we need to take a good hard look at the level of care that is being provided. I certainly support better pay and working conditions for pca's. I used to work as one for four dollars an hour years ago.

But I also want to see a dialogue started that includes our voices - those of us with disabilities who hire pca's and know the ins and outs of how to and how not to do the job. Being a pca is a service job that involves providing a service to the consumer. Too many times it is treated as if it is not about the person with a disability at all but a matter of just showing up - whenever - and writing it down on a piece of paper. We need a system where there is accountability for job performance just as there is for other jobs.

Saying these things, of course, puts me out on a limb. Any time any of us speak up about poor service from a pca, we put ourselves at risk of being the problem. We all know the drill. The agency tells us we are being unreasonable and difficult. Social workers tell us we have to make compromises. A checkmark is put next to our name on the agency list and we are told we have to find our own aides. This is what keeps many people with disabilities quiet.

Meanwhile we're looking across the room at a pca who is on our couch, watching our TV and eating Cheese Doodles. And we remain hungry, unbathed and in the same clothes we were in when she arrived.

Even considering backlash, we need to speak up about what goes on behind closed doors.

(*This post specifically refers to pca's I have worked with in the past.)