On November 4, at the 14th annual Charlie Smith Awards banquet, we celebrated Cliff Poetz, the winner of the 2016 award. Cliff has been advocating for people with disabilities for decades. I’m proud to say that I’ve known and seen Cliff’s extraordinary advocacy skills, his ability to stay focused on a particular topic and his ways of convincing his audience that an issue needs all of their support. Many in Minnesota’s disability community have witnessed how his powerful but unassuming presence rallies support for a wide range of causes.
Last September in this column I talked about the two different Personal Care Assistant programs: PCA Choice and Traditional PCA. I’ve always used Traditional PCA since I have my own career, and I don’t want to spend any of my scarce spare time recruiting, hiring, training, scheduling and all the other stuff that running a Choice program takes. I don’t feel I’m giving up any independence by being on Traditional PCA; in fact, I think it’s much more liberating for my needs. I’m not really concerned about who does my cares as long as they are willing to work, willing to learn, are prompt, respectful of my family and property and do their job to the best of their abilities. For the most part under the Traditional plan, I’ve always been able to meet potential employees, and along with my more veteran PCAs, we’ve done the bulk of the training routines. I do have some tasks that require a Qualified Professional to sign off and guarantee that each PCA has been sufficiently trained and has the skill to perform skilled tasks correctly and effectively.
There are, however, folks with disabilities who work full-time and use the PCA Choice program. One young person I know has a very demanding profession and has worked hard for her success. She spends much of her limited spare time in the evenings not relaxing and enjoying life but administering her PCA Choice program. She’s told me that in a good month her program only requires a few evenings a month to manage. Recently, she hasn’t had a good month and she’s spent lots of time managing and administrating her program.
There are other folks who find that all they can do is manage their PCA Choice program. Recruiting, interviewing, hiring, scheduling and securing reliable backups take up large portions of every day, and they end up having to do the same routine month after month because of the high turnover rate. I can’t believe that the cause of these discrepancies is personal. Could it really be that one person is the cause of his own low retention rate, or that the other person is so kind and organized that there are few problems? If so, then why are so many others having problems all of a sudden with hiring and keeping reliable staff? From my point of view, both of the individuals I mentioned have about the same number of needs for assistance with daily living. And both are decent, respectful and well-educated individuals; both have strong knowledge of their specific needs. Both are strong self-advocates and are dedicated to advocating for people with disabilities.
So if it’s not the clients, is it the work and the pay? Often, PCAs must work beyond their scheduled work plan; they burn out and feel undervalued by coworkers, agencies, and the consumer. Sometimes PCAs find themselves working shifts with tasks they are not completely familiar with. Too often this scenario causes a problem that could easily result in hospitalization and/or rehabilitation. Caregivers following others on shifts find essential tasks were neglected, and often don’t address the unfinished tasks, which creates a snowball effect of tasks and procedures neglected and not completed. In no time, PCAs lose their initiative and interest in finding things that need to be done and doing them. Often, too, the client is not a skillful manager of staff (I’m guilty) and doesn’t recognize an emerging problem. When problems are not quickly resolved by the client/supervisor or the agency with encouragement, support (or negative consequences, as needed), the situation often spirals downward towards the loss of a good employee and neglect of the care plan. The end result is often a serious, costly problem—recently, even death in a few cases in Minnesota’s disability community.
On the less dangerous but still debilitating side, it’s a rotten feeling when the belongings that you’ve worked hard for get routinely ruined by individuals who disrespect your home. I’ve known what it is to discover that clothes or linens, or even medical supplies, were thrown into a drawer or rolled up in a ball and thrown up high in a closet, out of sight of the person with the disability. As agencies find themselves operating on thin margins, they barely assume responsibility for a PCA team’s cohesion, which just creates more tension and worry for the consumer.
Because of the personal care employee shortage, individuals are being driven into a position to do they own scheduling and recruiting, even on “Traditional PCA” plans; they’re being forced, essentially, into a PCA Choice program. As I’ve written before, the amount of stress and anxiety that comes with not knowing who will be there to give cares can be mind-boggling. Putting individual caregivers into positions where they are responsible to work multiple shifts in a row because of no-shows by relief workers is unfair and illegal. But it happens.
We have a serious crisis and unfortunately I don’t see a quick resolution. So expect to hear more from me and others this session, legislators. We need your commitment to solving this crisis.
Meanwhile, I’m looking forward to Thanksgiving and the fun that it brings. Hope you all have a festive Turkey Day with many of your family and friends. We need to recognize how fortunate we are living in this country, being blessed with democracy and our many human and civil rights. As we go to press, it’s the middle of Election Day 2016, so I don’t know who our new president is. I’m counting on a couple things: that we don’t have a contested election (2000 was enough), and that we can all begin to come together at the end of this crazy year of campaigning.