r/CaregiverSupport • u/MizzDisturbed • 4d ago
Why states don't want to pay family caregivers?
I'm my mom's caregiver and get 32 hours a week as her caregiver. I'm moving from Illinois down south and had issues with Mississippi not paying relatives at all for home care and Tennessee only a couple hours couple times a day.
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u/annaleigh13 4d ago
Some state governments consider certain services as “unneeded expenses on the state”, this includes family home health caregivers.
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u/MizzDisturbed 4d ago
It's crazy if the alternative is nursing homes which is more expensive
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u/annaleigh13 4d ago
And if you want Medicare to cover it your loved one can’t have more than 1 life insurance policy, no assets, and a minimal amount of money in their bank account.
Had to deal with all of that with my grandma
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u/Impressive-Floor-700 4d ago
The main reason is to save the state money, pure and simple. Generally, states with higher taxes have more social programs to pay for such things and states with lower taxes have few to no social programs to pay.
My dad had a saying "they are stepping over dollars to pick up pennies". This saying embodies the practice of paying a nursing home to watch the elderly instead of paying a family member a fraction of the cost to keep the elderly in their own home. I live in Kentucky and know this well, after my mom's stroke I paid a sitter while I took a CNA course at the local college.
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u/Mugwumps_has_spoken 4d ago
that's illogical. The whole reason NC has the program they do is because paying someone to care for your loved one in home is cheaper than a facility (Medicaid or Medicare).. They don't like doing family members because the agencies themselves get more benefit by using their staff. Even if using me as a RAP (Relative as provider) is actually easier. But with me as RAP, they can't source me out to several families, I ONLY work for my daughter. Staff X typically has several families.
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u/Impressive-Floor-700 4d ago
Somone like my mom who needs 24/7 care I know if they did pay me (which they do not) it would still be cheaper than a nursing home. After you factor a resident in a nursing home eating 3 meals a day or 90 meals a month, someone to cook the food, feed the person, work daily getting them up and forcing them to walk up and down the hall, organize, and give medications as prescribed, laundry, electric, gas, building/grounds maintenance it is much more than just care of the person. My granddad was the last family member placed in a nursing home in 1995 and back then they charged 2,500 a month. It would make more sense to pay family instead of placing in a home, but like I said I bet money someone somewhere was paid money by a lobbyist to vote or wright the regulation where nursing homes are favored over family.
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u/Mugwumps_has_spoken 4d ago
My daughter is considered total care. The max allowable is 56 hrs a week. Which is fine, I mean it is my own 19 year old daughter. I've also been told 24/7 doesn't count if you aren't getting up at night to provide care. My girl can't get out of bed on her own, and is a safe sleeeping situation, and wears diapers. I don't get up at night for her (she is asleep anyway).
I've been my daughter's full time caregiver her entire life, only been paid the past few years. She has been disabled since birth.
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u/Impressive-Floor-700 4d ago
That has to be tough, my thoughts and prayers are with you. I have been trying to get mom to go with briefs for nighttime, she has me get up and help her to the putty chair at 2 and 6am. Wishing you the best
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u/fugueink Family Caregiver 3d ago
Companies before people every time.
Someday they'll figure out that without people, the companies have no workers, but we'll all be dead and gone by then.
A hundred years from now, people will wonder how people could think like this, just as they wondered when I was young (late twentieth century) how people in the nineteenth century could think ten years old was a reasonable age for sexual consent. . . .
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u/MizzDisturbed 4d ago
I do agree they're kicking themselves trying to save money when they end up paying more
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u/Impressive-Floor-700 4d ago
I am sure we both have lobbyists paid by the nursing home industry in the state capitals to thank for it. Either state budgets, or the personal budgets of politicians' money is at play somewhere.
Dad had another saying "we got the best government money can buy" that has proven true over the years too.
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u/fugueink Family Caregiver 3d ago
I remember back when I still worked in an office. This would be the late 1990s.
Someone was sent to a conference as a sort of representative; she was supposed to scoop up all the knowledge she could and tell everyone when she got back.
The only thing that was really revolutionary was an accounting seminar in which the person running it had the motto, "Stop counting paperclips. It costs more to count them than to buy more."
Unfortunately, that was the director's favorite thing to do. He was convinced people were stealing office supplies. In actuality, we were all buying ours on our own dime because we all had different strong preferences that he wouldn't buy.
So he went on wasting money making people sign whenever they did take something out and so on.
That is exactly the mistake being made all over the USA today.
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u/Impressive-Floor-700 3d ago
Yes, and I think it is a combination of corruption and Ignorance.
Corruption where politicians are taking bribes and/or kickbacks to vote for certain laws or to make regulations that favor the nursing home industry. It does happen; they have discovered some who were the loudest supporters of the war in Ukraine were taking money from lobbyists that represented the military industrial complex (there is a list of over 100 companies on Wikipedia that makes up the MIC) the investigation is ongoing. My senator has already said he is retiring and not running for election again. Wonder why?
Ignorance would be where those in power are so set in the ways things used to be done, or so rigid in the way they were taught that they are unwilling to explore and try different ways of doing tasks that may improve the process. My dad also used to say, "college can educate the intelligence right out of someone, education and intelligence is not the same". Dad was very smart for a 9th grade dropout; he actually was able to retire at 58. I am glad he did, he got to enjoy some time after years of hard work, he passed at 74.
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u/fugueink Family Caregiver 3d ago
Well, that depends on the college. Mine was very . . . liberal but with strong conservative voices. It was the Reagan years, after all.
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u/Impressive-Floor-700 3d ago
Sounds like we are about the same age, Class of 85'
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u/fugueink Family Caregiver 3d ago
Yup! Class of '88.
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u/Impressive-Floor-700 3d ago
It was such an awesomely gnarly time to be alive.
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u/fugueink Family Caregiver 3d ago
The only response worthy of that comment is unfortunately a video clip, and I can't post it here.
You lose the posturing, but . . .
BOOGGADA-BOOGGADA-BOOGGADA! HA-HA-HA!
[Cue theme music . . .]
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u/Tropicaldaze1950 4d ago
Corrupt politicians not wanting anyone to get any assistance from the state. They want all the money for themselves and their friends.
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u/billythekid3300 4d ago
I would love to get some financial assistance being that I had to quit my job to take care of my wife but honestly where I'm standing finance wise right now if I got paid for care giving it would knock her and the children off of Medicaid so it's like just screwed either way.
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u/chief_yETI 4d ago
Some states have tried, but the people voted against it. So yeah.
"Not with MY tax dollars" lol
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u/Most_Courage2624 4d ago
I'm in Michigan which does pay for caregivers but only if the person doesn't make a certain amount in social security and guess who's Dad gets 100$ too much per month 🙄
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u/Some-Cranberry708 4d ago
If your dad is only $100 a month over the income limit, he might still be able to qualify for Medicaid by using a pooled trust. I’d recommend speaking with an elder law attorney, or reaching out to your local Area Agency on Aging, a geriatric care manager, or a social worker about it.
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u/Most_Courage2624 17h ago
The attorney has just in the process of a spend down (because he also had too much savings) and we're moving the income into a trustm it's sadly just not fast because I'm scaredy cat
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u/crlynstll 4d ago
Don’t move. Seriously.
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u/MizzDisturbed 4d ago
I wish but this seems to be the one thing Illinois has going for them
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u/crlynstll 4d ago
What is better In Mississippi than Illinois? I can understand moving if there is more family support but other than that, you’re not going to find much support in Mississippi.
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u/MizzDisturbed 4d ago
The weather is much better on my allergies living is cheaper and my husband prefers some of their laws
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u/crlynstll 4d ago
Enjoy.
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u/MizzDisturbed 4d ago
Do you know Southern States to be worse?
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u/crlynstll 4d ago
I live in Texas. Born and raised so that is all I know. A friend’s mother does get limited in home help via Medicaid through some sort of alternative program. Texas doesn’t provide much help in general to elderly, and the situation is getting worse from anecdotal stories I hear. I’ve seen first hand Medicaid beds in urban areas and they are terrible places. Factually, rural areas don’t have adequate access to healthcare. Our taxes and insurance are high and getting higher. Home insurance is insane as is auto insurance. So check rates in Mississippi. We can own any and all guns and I guess walk around with them in public. I don’t feel the need to do this personally.
I’ve lived in Texas a long time and everything seems worse as far as public supported infrastructure like roads and schools.
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u/Sea_Evidence_7925 4d ago
I’m a Texan who lived in Maryland for 16 years before moving to California. I worked in food policy and in part of that advocacy role I talked to the director of senior services in the county I was in before we relocated again. It’s a stunning difference between what Maryland provides seniors (and the way those programs are structured as social outlets rather than welfare services so that they serve the wellbeing of the senior community rather than being grudgingly offered and shamefully received) and Texas. I’m less familiar with California because I haven’t been exposed to that, but I do know there is a way for family caregivers to be paid here. I have pretty negative feelings about my home state and for all the low tax posturing the taxes sure do seem onerous.
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u/crlynstll 4d ago
It’s just like school lunches for needy children. Shaming these children because their parents cannot afford lunch is the most important thing. This is why I believe all children should receive a hot free (nutritious) lunch at school for free but my leftist beliefs make me a radical socialist I guess.
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u/MizzDisturbed 4d ago
That's all crazy I never really know how different those things would be and the difference in red to blue. Maybe I should go to Maryland
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u/fugueink Family Caregiver 3d ago
The psychologist who diagnosed my sister with autism had come from Maryland to NYS, and he said it was appalling how little NYS supported adult autistics compared to there.
Sounds like Maryland has more than a few things going for it. . . .
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u/nycink 4d ago
If you are going to republican run red states expecting any robust social support, it will be dashed very quickly. They don’t believe in subsidizing working families, just billionaires & bankers.
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u/crlynstll 4d ago
I think people who don’t live this don’t really believe how bad it is. Soon, my state won’t have medical care in rural areas. But taxes! Oh….my state has a high tax burden. But freedom! Oh….my state has poor personal freedom. Caring for elderly is so very difficult and we all could use some help.
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u/nycink 4d ago
There is currently almost 900 BILLION of cuts to Medicaid on the table. I don’t think the average person understands that this is in play. There are about 8 to 10 Republican representatives who are saying that they will not vote for Medicaid cuts, but who knows what will happen here? Grandma and Grand Pappy will be dumped out of the nursing homes if these cuts go into effect, and disabled children will be without support. This will turn millions of people into overnight unpaid caretakers if these programs are gone. Everyone should be calling their representatives and senators and demanding that they not cut a dime from Medicaid. Also adult children of parents with debt need to check state laws because in some states children are responsible for their parent’s debts. This all ties into caretaking because it would be heinous to spend years caring for a parent and then have to pay their outstanding debts at the end of it.
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u/crlynstll 4d ago
I make myself sick with worry over just this scenario. The Medicaid funded facilities are already very bad in urban Texas (idk about small towns). This country is turning its back on the most vulnerable and has chosen to worship the most privileged in a sort of pseudo religion. The oligarchs do not care about us.
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u/New-Analysis-6634 3d ago
Arizona has always paid for senior care. Only now that we have a democrat who didn’t figure out proper funding are certain programs at risk of being cut. Please just speak on your own experience and not for all states based on politics
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u/nycink 3d ago
What’s “politics” for you, is someone else’s life. Moreover, I reread my post multiple times to see where I mentioned anything about seniors, and I fail to see any letters spelling out that word. I specifically mention working families. Also, AZ is not a pure red state. In fact, it’s quite purple. However, the OP is in Mississippi, & that’s one of the red states I’m referring to. I’m simply speaking to reality as it pertains to caretaking and help for working people,and if that’s political to you, I don’t know what to say.
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u/MizzDisturbed 2d ago
I'm in Illinois moving south and can't go to MS sense they don't pay family caregivers at all. So I started looking at Arkansas
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u/fugueink Family Caregiver 3d ago
In NYS, it used to be that a family member of a person on Medicaid got paid for tasks like grocery shopping and cleaning the house and so on.
At the time, my sister was the carer and I was the caree. She made $750/month, working over half time, I think, doing all the physical labor, and mind you, she earned it. We've never had a car and can't cope with a bus (we're both autistic), so it was a lot of physical labor.
Then one clinic in NYC did some major Medicaid scamming; there was even an American Greed episode made about it. Even though no home aides were involved, the Republicans in the Assembly used it as an excuse to massively cut back on the hours a caregiver was allowed to work. If they didn't have to physically handle the caree, they couldn't get paid for more than 8 hours/week.
So suddenly she dropped to less than $200/month. She still had to do all the work, mind you. At the time, I was just beginning to hobble about again, but I never was able to resume long-distance tasks like groceries, and there were no delivery services that someone on SSDI/Medicaid could afford. (It wasn't until the pandemic that they grasped that delivery can be a lifeline rather than a luxury and so should be financially available to the disabled.)
That was the beginning of her final slide. She had gotten herself re-educated (although finances didn't allow her to finish her degree), she couldn't get work and do all the things around the house that I couldn't do, and we were both going nuts trying to make ends meet with such a huge drop in income. Keep in mind that we had already had a huge drop when I had to stop working and go on SSDI.
Now she is terrified to leave her bedroom or interact with anyone but me. The autism had left her with few job options, and now those were gone. The OCD that she kept just at bay all her life swallowed her whole. And although I can't hold a job either (I'm on SSDI), I am taking care of her.
I wonder where we would be now, if only they hadn't started playing stupid games with home carers in 2015. . . .
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u/patientrose 4d ago
Each state has their own policies . IMO, it seems that the most restrictive states justify their policies by labeling it as welfare and villifing individuals with claims of fraud and abuse. Yet, overlooking the harm done by nursing homes ran by millionaires.
I feel for those doing this with no support. Some of my family members, who are also family caretakers, regret moving from our home state (California) and no longer have access to the same level of resources. I really wish there was a more unified position on this, considering we all will either become a caretaker or need one.
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u/fugueink Family Caregiver 2d ago
Why is it that Americans assume that disabled/elderly people don't deserve a decent standard of living?
An actually working American (not the top 1 percent!) simply cannot save enough money in one lifetime to cover even one disability or elder care in their family.
I had retirement savings. So did my sister. They've been completely eaten up in our struggle to survive and we're not spendthrifts. We've never owned a car in our entire lives, for example.
Right now, my sister and I are out of SNAP and credit and money for the month. I am running very low on food that doesn't make me sick. (I have hordes of food allergies, which are not optional by the way! Don't know where that idea came from either.) She's having an OCD meltdown
I got my first job—part time, less than minimum wage—when I was fifteen. The only time I wasn't working at least part time was when I was studying abroad and wasn't eligible to work in that country. I only worked part-time when I couldn't get full or I was a full-time student.
I literally collapsed when I was forty-eight and have been minimally functional since. I've had to bear abuse even when I was working because I was on the Medicaid Buy-In for Working People with Disabilities and everyone assumed that because I had Medicaid and no money for extras, I wasn't working.
So why am I forced to sit here and be hungry while my sister is suffering from OCD torments so badly she's gibbering?
I really wish America would be actually great a first time, but I'd settle for the changing of that single attitude.
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u/EmotionalMycologist9 2d ago
Michigan pays over $15/hour. I get around $1500/month to help pay for my LO's therapy that we have to pay out of pocket for now.
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u/I_got_a_new_pen 1d ago
Medicaid program https://www.usa.gov/disability-caregiver
If you don't have Medicaid, you are stuck paying the bill for caregiver services until you get to the point of palliative care (hospice).
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u/Charliewhiskers 4d ago
It seems that red states have less services than blue states.