I recently did a series that is over at A Different Light entitled Hiring An Arm and a Leg about personal care assistants. After talking to Meredith yesterday, I've decided to follow up on that with a piece about an unspoken issue I often encounter due to the shortage of home health care aides (personal care assistants) - having to overpay - in the extreme- to get the help I need to back her up or add to her services. It bothers her as and it bothers me. And it's very prevalent in the area where I live.
I want to be clear that I support the efforts of personal care assistants in raising their hourly wages from the paltry eight to ten dollars an hour it currently is. And I support them asking for more than that.
But it's becoming more common around here that pca's I hire who are paid eight to ten dollars an hour by an agency want to charge me triple that amount. (I've been asked to pay as much as 40 dollars an hour.)
The sad part about this is that if I'm over a barrel in terms of needing help, I have three choices: I can pay the agency rate (which provides bonded help) or pay the pca who is demanding that hourly wage or do without the help in the near term and wait out the situation. Depending on whether my health is on the line or not, I make my choices. However the truth is that paying this rate depletes my resources rapidly. And there are times when I can't afford it so it's not a choice.
I'm writing about this because I'm seeing this happen more frequently. "Freelancing" pca's seem to be overcharging people with disabilities to make up the money they lose working for an agency. They aren't bonded or insured, offer no extra services, have no specialized training and do not even offer coupons. In a nutshell, there is no consumer protection.
I'm going to stick my neck out here and say that I think this is a backlash toward being underpaid and underappreciated. Although I could be noble and say I understand, I really have to say that my experience in dealing with this makes me feel as if I'm being "held up". It turns me off. Even my pca agrees with me that this trend is hurting the relationships between people with disabilities and those working as pca's.
It reminds me of the story I once heard from a woman with MS who lived in a disability housing project. She said that the pca's provided by them had a policy - they would come into her apartment, open her wallet and take what was in there if it was "enough". If not, they walked out without helping her at all. So when her retired parents who lived on Social Security visited on the weekends,she would have them leave cash in there so she could get care for the week. When I asked her how much had to be in there, she responded "At least two hundred dollars a week." Out of fear, she wouldn't let me help her confront the situation.
It's sad that the current situation where pca's are so grossly underpaid results in situations like this, where those of us with disabilities get "held up" by angry and resentful burned out workers.
From now on, when I go without help rather than pay these rates, it's not because I don't think pca's deserve better pay. I'm willing to go higher (if and when I can afford it )than the average pay they get from agencies. I just can't triple or quadruple it to make up the difference.