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I found out some more information today. Now my mom is on Medicaid Waiver (Home Care) and approved for 31 hours. The Home Care agency charges $30/hr. self pay but Medicaid Waiver only pays them $20/hr. My mom could get 24 hour home care if she was able to self-pay but since she is on Medicaid Waiver they just send whoever happens to be available, whenever they are available. An example would be like if Lisa works for 6 hours at another place from 6am to noon, then they might send her to my mom's place for 2 hours from 1pm to 3pm.


I tried to see if they had more availability and I was told they might be able to send Beth on Monday from 8am to 10am, Lori on Tuesday from 11am to 3pm. Lisa on Wednesday from 1pm to 3pm. Nobody available on Thursday.


I was informed they reduced their hours with my mom because she called to complain her caregivers were coming too often and she accused one of the caregivers of stealing a stapler from her desk so that person can never be sent back. My mom has dementia and she thinks the neighbors exchanged their refrigerator for hers while we were at a doctor's appointment.


When I started doing this, I was supposed to be her unpaid primary caregiver but ended up being able to pick up whatever hours the Home Care agency didn't cover. So if my mom has 31 hours, the agency covers 5 hours then I can bill Medicaid Waiver for the 26 remaining hours. Those 31 hours are really supposed to be respite hours for me, but that's not how it's working out. I'm being viewed as an employee of the state who gets an average of $1,200 per month to care for my mom. Keep in mind that they pay the agency $20/hr but I only get $14/hr.


I have a cousin who wants to set me up with a woodshop in the garage, he told me to call the agency and tell them they needed to cover all 31 available hours because I would be doing my own thing and wouldn't be available but they said that would be impossible but they might be able to cover 16 to 20 of those hours but she said if my mom complains again, it will be back to 2 to 3 hours once or twice a week. I was told if that wasn't acceptable I would have to do it all by myself or find another agency.


I told my mom she was either going to have to accept what the home care agency offers, go to the Nursing Home or I was just going to have to leave and she would have to figure it out. I'll even get her a prepaid flip cell phone that she can operate and I'll leave her a list of phone numbers along with her medic alert button. When she finally realizes she needs help, she can call somebody.

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In terms of getting aids in...it might have to do with who is available and who is willing. There is currently a labor shortage. Think about maybe having school-aged kids and then having to work irregular and spotty hours. Not saying this is your fault, it's just how it is right now.

Regarding you getting your mom -- with dementia and memory issues -- a flip phone or call alert button and expecting her to remember how to use it... I respectfully suggest you watch some Teepa Snow videos on YouTube so you can learn more about your mom's condition. This will help you know what to expect and to better help her and engage with her. She isn't going to "realize" she needs help OR know that she should call "somebody". It sounds like your ability and willingness to help her is wearing you down, which is understandable and shared by many on this forum. You can search online to see if your state pays for some or all of AL for you mom in a facility that accepts Medicaid residents. f she qualifies for MC then Medicaid pays for all of that. Please be aware that many of the better facilities have waiting lists for those who are not current residents, so you may want to just get her on some lists. It took my MIL 3 years for her name to come up on the list. Do you live with her? Or she with you? Are you her PoA or legal guardian? If none of these things, then IMO you are under no ethical obligation to provide or manage all (or any) of her care. But you should at least figure out what you want your role to be and make sure her vulnerability is on the county's radar so that she can be protected. If you choose to step away, you will need to inform her case worker.
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SGeorge24 Apr 2021
Like an idiot, I moved in with my mom and put her address on my driver's license before I knew about Medicaid Waiver. I actually applied for the wrong program for her several times. I was supposed to take a couple weeks off work to get her settled into a facility but she refused to go. It's not possible to even talk to her about it. They had an available Medicaid bed locally but while the doctor says he has noticed signs of dementia, my mom does have lucid times and she fought going until they filled the bed. At first they put my mom on Pass Chore which only gave her 4.5 hours per week and paid something like $2.45 per quarter hour. 1/2 hour to cook twice a week, 15 minutes for dishes twice a week, 15 minutes to clean the house, etc. A friend gave me a referral to a home care agency, I didn't know there was such a thing and the rep from the home care agency is the one who told me how to apply for Medicaid Waiver. My mom's caseworker evaluated her as needing 24/7 care then approved her for 31 hours per week. Keep in mind, due to the COVID-19 virus, nobody from Medicaid has been here to visit my mom in over a year, everything has been done over the phone and email.

My mom did a Durable POA for me back in 2008, but I first found the papers in my dad's old safe a couple months ago. My mom never told me about the papers and doesn't remember doing them but a lawyer says they appear to be legal,
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Definitely not right; but sadly, it's not out of the norm. Care to Medicaid recipients is infamously poorer than for private or self-pay payers.

Is this agency the only game in town? Perhaps a newer agency will be more helpful as they're trying to establish a customer base.

Please do contact Case Management and see what can be done to give consistent care to Mom. They may be aware of new legislation which pays family members for being caregivers. Theoretically, a certified home aide could be a Medicaid provider, so you could bypass the agency and work directly with a properly trained individual or two. It's important for you to know what's possible in your State.

That you'll get frustrated - with Mom, health professionals, everything in sight - is a given when it comes to being a caregiver. The best you can do is to get informed and take care of yourself so you can help Mom get the care (she won't admit) she needs.

Be well.
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SGeorge24 Apr 2021
This is a small town, there is nothing in this little town so the agency has to send someone from 30 miles away. I called my mom's caseworker and told her I needed an agency who could provide my mom with at least 30 hours of care per week, but she said there was nothing like that available in the area, she said we had the best agency that works with Waiver, not all agencies in the area accept Medicaid waiver.

It makes even less sense that they can authorize my mom to have a $15,000 bathroom renovation and a $10,000 entryway renovation to help keep her in her home but only give her 31 hours per week when there's no such thing as a Home Care Agency that can cover the full 31 hours. I can get paid for the hours the agency doesn't work but then I'm stuck in the house.
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Self-pay clients subsidize the Medicaid clients, so these agencies need to bill more self-pay hours just to stay in business. It makes sense that they want more consistently billable hours from the self-pay clients, so unfortunately, the Medicaid clients get what's left.

If you have power of attorney for your mom, you should be the one the agency listens to regarding caregivers, not her.
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The self-pay clients are what keeps the agency afloat. It's a business and all businesses treat their best-paying clients well so that they retain their business. Home care employees can also pick and choose their assignments. Why would someone want to cobble together work in increments of a few hours when working for one or two self-pay clients makes their ends meet? Stop looking at this as right or wrong when it's just business. And remember that demand for home care is so high right now that agencies can cherry pick and lemon drop.
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That is not completely correct. Agencies have a care tiered system. So for instance, my mom sets up meds for Medicaid clients in their homes. She has one pt. on Medicaid 24/7 care bedridden, no legs. That is considered priority care and would outweigh a private pay with mild needs.

Have your mom reassessed.
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