I received a call from my case manager yesterday and, once again, the weekend agency dropped the Sat and Sun night shift. [I wasn't surprised, the caregiver that was here Sat and Sun, claimed, as she left my home on Sunday, that she had been only told to work for the two days. Except she and I had spoken at length the night before about my needing weekend care and how much I appreciated her taking the hours. I have no idea how she can NOT mention just a little earlier that she wasn't returning NEXT weekend.] Within the hour, I received a call from another agency confirming my address and location, letting me know they had someone available. Waiting now for confirmation. Caregiver Roulette. No wonder my nerves are shot.
I've been trying to read up on the laws and Rules within the state of Arizona as well as groups to join to make things happen, make things better, at least stability would be nice.
Home | Elderly and Physically Disabled Providers Alliance has some great info on how things work in general in government and more specifics in Arizona.
I finished reading the Arizona Administrative Code. Enlightening.
I've also been listening to podcasts and such of several disability advocates from around the country. There are a lot of us. We shouldn't have to fight so hard to make sure we have the simple 'privilege' of getting out of bed in the morning, with a shower and clean clothes. A lot of us could work and be functioning citizens if that seemingly simple event could be guaranteed.
27 June, 2019
So, as we go:
I've been working with my case manager to find out, once more this week, calling all of the agencies once again and she has a hit. An agency DID indeed agree to take my Saturday and Sunday nights. Intake is in the morning and the weight off my shoulders was PALPABLE. We shall see how it goes.
I still want to know how the system works. And it is stunning how many people who WORK in the system itself have NO idea how it works nor do they want to know. When I ask about the details on the HIRING of the agencies, most people have said, "huh, I don't know, let's see what I can find out." And then, you know, nothing. When I called Customer Care today, the agent, when I asked "how does the system work? How much do the agencies make on clients? What are their responsibilities to clients?" And his response? "Why are you asking? Why would you want to know this information?" The suspicion and doubt I am presented with is stunning. Why is it so shocking to know that a client, totally dependant on the the public health care system, would want to know about their own rights and responsibilities? I cannot hold the agencies accountable if I don't know what is in their contracts. The agent tried to tell me the contracts are confidential. I have to look further, but I am fairly sure that federal funds are public knowledge. But, damn, it doesn't AFFECT him or his job, so why get defensive when I ask the answers to questions I have about my care?
I've spent the last few days reading up on Arizona Administrative Code, all of it. I still have a lot of reading in front of me.
I've been working with my case manager to find out, once more this week, calling all of the agencies once again and she has a hit. An agency DID indeed agree to take my Saturday and Sunday nights. Intake is in the morning and the weight off my shoulders was PALPABLE. We shall see how it goes.
I still want to know how the system works. And it is stunning how many people who WORK in the system itself have NO idea how it works nor do they want to know. When I ask about the details on the HIRING of the agencies, most people have said, "huh, I don't know, let's see what I can find out." And then, you know, nothing. When I called Customer Care today, the agent, when I asked "how does the system work? How much do the agencies make on clients? What are their responsibilities to clients?" And his response? "Why are you asking? Why would you want to know this information?" The suspicion and doubt I am presented with is stunning. Why is it so shocking to know that a client, totally dependant on the the public health care system, would want to know about their own rights and responsibilities? I cannot hold the agencies accountable if I don't know what is in their contracts. The agent tried to tell me the contracts are confidential. I have to look further, but I am fairly sure that federal funds are public knowledge. But, damn, it doesn't AFFECT him or his job, so why get defensive when I ask the answers to questions I have about my care?
I've spent the last few days reading up on Arizona Administrative Code, all of it. I still have a lot of reading in front of me.
16 June, 2019
It has been FAR too long for posting here. I SHOULD be posting here far more often with every issue I have with my daily care and the health issues of everyone.
Things have not changed. Caregivers are STILL Paid minimum wage, less than fast food workers get. So, more pay and less responsibility for another person while flipping a burger, frying chicken. I just reread all the posts from what seems so long ago. Deja vu all over again. And little has changed. It's still a struggle to find good, constant, committed caregiver. They do this for a while, then want, NEED to find a better paying job. About half of the caregiver are unable to maintain a vehicle. And especially evenings and nights, why go to a job if your car isn't likely to make the trip back home?
Yet agencies WON'T pay the caregivers AND clients what is deserved for the work. It shouldn't be a minimum wage job. But Health care shouldn't be a for profit business, either. Agencies with a profit margin are cutting into employees pay, that's how profits work, too. When client care is done for a profit, clients suffer. Clients get minimum care, minimum time, minimum respect and minimum consideration. Clients are the disabled and the elderly, populations of people who should be treated better. A population of people who shouldn't be treated as a bother and as cogs in the business of profit.
Caregiving is difficult. Difficult on the caregiving and the client. Being in need of care is an unending, daily part of LIFE. I have to trust people I do not know and explain over and over what I need and how it needs to be done. When you care for another person, you ARE responsible for their wellbeing, health, respect and happiness, too. And yes, You have to respect and listen to the people to whom you're assigned to care. That seems obvious but it isn't. I've had a lot of people come into my home, convinced of their own skills and knowledge of the work yet totally oblivious. I've been verbally abused enough to learn I have to be saccharine with some to keep a peace I should never have to ask for from someone in MY home. And just as many who seriously have no idea or care that this IS a job they should be more serious ABOUT. They come into my home bored, undertrained to the point that they really have no idea what they are walking into and some DO take it out on the clients. Meanwhile, I've had to train most caregivers on everything I need done. Most have only seen but never used a patient lift and never, ever seen a bedpan. And when they are sent out to random clients, they've had no explanation of who or what they are walking into when entering a client's home.
And, at least for me, an unfortunate experience that happens more and more is an active contempt from staff of the agencies. Though some do sincerely care and want to do the best they can, far too many seem to feel as if clients and caregivers both are more of a nuisance. Those who DO care are discouraged from helping by way of the mere mention of "liability concerns." It's difficult not to hear the tone of annoyance and the sighs of boredom from some of them. Far too many "no call, no shows" happen and when I've called in to report such an incident, the responses should never be, "so, don't you have someone to help you?" in an irritated tone, as if I interrupted THEIR day.
Agencies and even the government branches do NOT want the actual responsibility of Caring for those who NEED Care. They SURE do want to get PAID for services, though.
Things have not changed. Caregivers are STILL Paid minimum wage, less than fast food workers get. So, more pay and less responsibility for another person while flipping a burger, frying chicken. I just reread all the posts from what seems so long ago. Deja vu all over again. And little has changed. It's still a struggle to find good, constant, committed caregiver. They do this for a while, then want, NEED to find a better paying job. About half of the caregiver are unable to maintain a vehicle. And especially evenings and nights, why go to a job if your car isn't likely to make the trip back home?
Yet agencies WON'T pay the caregivers AND clients what is deserved for the work. It shouldn't be a minimum wage job. But Health care shouldn't be a for profit business, either. Agencies with a profit margin are cutting into employees pay, that's how profits work, too. When client care is done for a profit, clients suffer. Clients get minimum care, minimum time, minimum respect and minimum consideration. Clients are the disabled and the elderly, populations of people who should be treated better. A population of people who shouldn't be treated as a bother and as cogs in the business of profit.
Caregiving is difficult. Difficult on the caregiving and the client. Being in need of care is an unending, daily part of LIFE. I have to trust people I do not know and explain over and over what I need and how it needs to be done. When you care for another person, you ARE responsible for their wellbeing, health, respect and happiness, too. And yes, You have to respect and listen to the people to whom you're assigned to care. That seems obvious but it isn't. I've had a lot of people come into my home, convinced of their own skills and knowledge of the work yet totally oblivious. I've been verbally abused enough to learn I have to be saccharine with some to keep a peace I should never have to ask for from someone in MY home. And just as many who seriously have no idea or care that this IS a job they should be more serious ABOUT. They come into my home bored, undertrained to the point that they really have no idea what they are walking into and some DO take it out on the clients. Meanwhile, I've had to train most caregivers on everything I need done. Most have only seen but never used a patient lift and never, ever seen a bedpan. And when they are sent out to random clients, they've had no explanation of who or what they are walking into when entering a client's home.
And, at least for me, an unfortunate experience that happens more and more is an active contempt from staff of the agencies. Though some do sincerely care and want to do the best they can, far too many seem to feel as if clients and caregivers both are more of a nuisance. Those who DO care are discouraged from helping by way of the mere mention of "liability concerns." It's difficult not to hear the tone of annoyance and the sighs of boredom from some of them. Far too many "no call, no shows" happen and when I've called in to report such an incident, the responses should never be, "so, don't you have someone to help you?" in an irritated tone, as if I interrupted THEIR day.
Agencies and even the government branches do NOT want the actual responsibility of Caring for those who NEED Care. They SURE do want to get PAID for services, though.
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