Inevitably, every three years I switch from one home health agency to another. I try, I plead, I beg. Just give me one more year! And it could happen, if I wanted to have a death wish.
At 18 my parents gave up their roles as personal caregivers and I was introduced to the professional type. My insurance paid for the agency and in turn the agency employed a caregiver on my behalf. When I was living in Indiana, I had Interim provide services, and for the most part, I had no complaints. Sure, there were a couple of times where I was close to running out of hours, but it all worked out in the end. And the people I met really cared about their jobs.
Now that I’m back in Texas? Texas sucks.
I’m now the pain in the ass. The person whom they wish would go to a nursing home but won’t.
I don’t get service. Texas doesn’t care. So I can spend 72 hours with no assistance and it’s perfectly legal to do so. I’m so spoiled.
Unfortunately, it’s a fact that my disability leaves me with limited mobility. I need assistance with everything. Dressing, cooking, getting out of bed, etc, etc. If no one shows up in the morning, then I’m stuck in bed until somebody does. My dog is just thrilled with that aspect. He gets more time with me. More time to nap and be lazy. Me, on the other hand- not so thrilled. My bladder balloons to inhuman proportions and I begin to salivate over that insignificant bowl of cereal that I could care less for but I just have to have!
And the help? No where to be found!
Some agencies provide floater caregivers when your regular person doesn’t show up. Not the one I’m with now. I can call the on call operator in hysterics, and all she’ll say is, “Well what do you want me to do?”
“Your frickin’ job.”
And it’s like I’m yelling at a wall. They can hear my pleas, but they won’t pass go. They will, however, collect the $200 dollars.
DADS (Dept of Aging and Disability Services) and TxHHS (Tx Health and Human Services) are the two state agencies with over-site. They have complaint forms, email or a number to call. Choose my poison, so to say. What they don’t explain fully is what constitutes abuse. What is considered neglect? Choose a number from 1 to 10 but they’re not going to say which one triggers the other.
In the past, when I’ve had a disruption in service, when I’ve been threatened by the nurses, I’ve always made it a point to call. The first time, DADS didn’t get back to me for 6 months! Wow. I was so important that they decided to call after a whole 6 months, and the guy who investigated told me that agency was right and I was wrong. It took him 6 months to figure that out.
The last time I called it only took a month, and I was told again that the neglect was acceptable. Really? Texas pretty much told me to put up and shut up. Thanks!
Now I’m pondering whether to make this last report. I’ve been left without providers a few times. It was stressful, but I survived. However, I feel like I can’t hold them accountable. I may lose my job, but they’ll still rake in the bucks.
As a person I have a right to receive services in my home. I live, I work, own my own home. I refuse to fall into some category that labels me as a cripple that should be locked away in a nursing home. Why? Because I can’t clean my own ass. Whatever.
I’m ready to declare war. Throw the book at the home health agency and anyone else who sees me as something I’m not. I’m so done.
For me, the neglect bugs me, but I manage. I fight back. For me, the most depressing thing is that it seems like I’m the only one voicing these frustrations. Every where I turn to, I see complacent people. Neglected and broken, they seem to have accepted this as the norm. I hate that.
I meet them on the bus. Their eyes grow wide with amazement. Do I really get service more than once a day, they ask? They go days without seeing anyone. The agency doesn’t care. And they’re ok with it. They know no other way.
Why can’t everyone be like me, right? I don’t even want to be me sometimes.
And don’t get me started on how poorly caregivers are paid. The inhumanity is appalling.
P.S. Dedicated to Blogging Against Disablism Day 2014