I'm my mom's primary caregiver. She is on Medicaid Waiver, but since I'm living in her house she can only be approved for 31 hours per week. I have to share those hours with an agency that comes in for a few hours per week.

My mom is bad enough I have to stay in her house 24/7/365 or at least able to be able to hear her and come running when she needs help. What that means is that I have to be around all the time, but I can only bill Medicaid for 20 or 24 hours per week, whatever the agency doesn't work. I get called on it if I overbill, so I have to be careful not to bill for hours the agency worked.

As of the 1st of the year, they switched to an EVV billing system (Electronic Visit Verification) I'm considered an independent caregiver so I have to schedule my visits on my pc then check in and out using a smartphone or tablet with GPS. The GPS verifies that I was at my mom's house at the time I claim to have provided the services, so if I'm at a different location, they will know and I have to explain why. I have to use Tellus It works okay because I submit my claim on Saturday night AFTER I've completed my hours for the week and my pay is in my checking account by Friday.

I don't know if I'm right or not, but I've been scheduling myself for several hours every day especially when the agency isn't here. Keeping in mind that I'm always here but I can only bill for maybe 24 hours per week, is it better to stretch my time over the entire week and only schedule myself for 3 or 4 hours per day or would it matter if I did 8 hours 3 days a week? My Cousin said I should just put my hours in Sunday, Monday and Wednesday if I'm only allowed 24 hours so I'm done for the week. His thinking, if my mom would have to go to the hospital on Thursday, I don't get paid for the days she isn't here so I would already have my hours completed for the week as opposed to only being paid for 16 hours because that's all that was completed.

I'll still be here doing the same thing I've been doing before for the remaining days even if I run out of billable time, I don't leave. My only reason for billing a few hours per day is to show that I was here every day, if I schedule myself to be off Friday, I'm still here, taking her to appointments, doing her laundry, doing her cooking, just no proof that I was here. If I schedule myself from 11am to 4pm I still have to get her breakfast at 8am, supper at 5pm, take her to the bathroom, come running at 2am etc.

When I asked the Medicaid office, they have no clue.

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SGeorge, glad to read from one of your replies below that you have a meeting with an attorney today. Great!

Please keep us updated with what you find out. We often read on this site of all the various ways caregivers can become impoverished but I had no idea Medicaid programs could be so actively bad for the family caregiver. I mean, you are just trying to do the right thing by your loved one AND make sure you don’t end up living under a bridge in the near future.
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That agency, so they cannot give your mom a fixed schedule? That does not sound right. If they are participating in inhome services paid by the state, they need to follow state guidelines & reporting and state is going to want to have scheduling done.

There are other agencies participating in the state paid program.
Switch agencies and have one that can do fixed schedule.
Then perhaps you do 5-6 mornings a week (as you live there, this will tie in nicely to the GPS) on a fixed schedule to get to the balance to meet 31 hours ea week.

But the bigger issue IMHO is if your mom is really truly 24/7, I don’t see how you alone can manage this. The home health agency, when they are there does someone in the family need to be in the home at the same time OR can you leave and do grocery shopping, etc? Even if you can leave for the 6-8 hr home health visit, that’s not enough personal time for you, Either your going to need other family to come in to help for several hours weekly so you actually have your own personal time OR mom needs to move into a facility where there is staff to do 24/7 oversight. If mom is evaluated for 31 hrs, that is alot of inhome care time. Should she go over that & into the 35/36+ that’s heading into full time and that’s in a facility care for most states (unless your in a high cost of care state like NY or Alaska).

Is there a reason why placing mom into LTC isn’t an option? Is there possibly a Medicaid penalty issue? Or is it that moms income (like her SS) is what is keeping the household afloat? The latter seems to happen quite a lot, esp as folks have lost jobs due to Covid.
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SGeorge24 Feb 2021
I'll just say that I'm to the point where I can't manage this, my mom's mind totally drives me nuts some days. I got into a big argument with the home agency this morning, I guess now they are only going to come on Tuesdays for 3 hours. What they WANTED to do was take all my hours then send different people at different times each day. They said my mom's 31 hours was for respite care but they aren't always available 31 hours every week so I was authorized to get paid for any hours they didn't work. My mom's case worker actually told me I have to leave the house when the agency is there or they can't be paid by Medicaid. I told her I wasn't leaving the house for 2 hours 6 days a week! What I wanted was for the agency to come Thursdays for 8 hours but they said that wouldn't be possible.

I moved in because my mom was falling and nobody was checking on her and like an idiot, I thought I could check on her daily, but then she started to decline, her dementia is getting worse and she can't walk without help. Nobody from the family will help, in fact I've been here since last March and nobody else has been here except the home care agency.

My mom doesn't just refuse to go to the nursing home, she goes completely ballistic if anyone even mentions it. She said it's her house and she has the right to die in it. I tried to explain to her that I lost my job and need to apply for another job but she expects me to put my life on hold and take care of her so she doesn't have to go to the nursing home.

I don't even get a full nights sleep, she'll wake me up at 2am to take her to the bathroom, then she'll wake me up at 4am because she's confused what time it is, thinks we overslept and she's late for an appointment which is actually for the next day. I'm seeing a lawyer today at 3pm to ask some questions.
Ok I think that your are over analyzing the situation.

Your mom is evaluated for 31 hours a week. So how many hours is the agency fixed on providing? Let’s say it’s 2 - 5 hr days on Tues & Thurs. I’d really try to have the home health agency come in with a fixed schedule so you can plan your time to submit.

So 31 -10 is 20. You live at the house, right. So your sleeping there, regular every day, right? Then I’d just schedule each daytime morning from 7AM -10 AM so that’s 3 x 5 =15. Then the extra 5 hrs you do whatever single 5 hr evening or weekend day works for you to be there. You do NOT ever want to “work” over 8 hrs in a single day as I bet that triggers overtime which is not allowed.

whether you work 20 or 25 or 30 or 42 hrs a week doesn’t matter. She is approved for only 31 hrs total. If she is RE-evaluated and shown to be beyond 31 hours inhome, I bet that would mean she is no longer eligible for in home but instead her care needs are very significant and has to be done in a skilled nursing care facility. She’d have to move to a NH for more care. If she’s at 31 right now that at the edge of ok for at home. I imagine her care needs are quite a lot. Most posters on this site who have done in home has it at around 22 hours total; 31 is high.

some states, like NYS & Alaska, allow for 24/7 in home care as facility care is super expensive so in home is actually cheaper. It’s pretty rare for other states to do this. Good luck in all this. Being an in home 24/7 caregiver isn’t simple, your a good daughter.
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SGeorge24 Feb 2021
They actually said the way my mom was evaluated, she can't be left alone at all. She wouldn't be able to get to the bathroom by herself and she might take a whole bottle of pills if somebody isn't watching her. They said they could approve my mom for 35 hours but they said they could only give her 31 because I live in her house, I have my bedroom but then we share everything else. Most of the problem comes from Medicaid because the home care agency charges $30/hr. self pay but Medicaid only pays them $20/hr so a self pay client gets priority and my mom just gets fit in there someplace if they have time. The other week the aid was here from 12:30 pm to 3 pm. They were wanting to come for 3 hours per day 6 days per week then I could have whatever hours were left, but they wanted to send somebody different every day and come at different times of the day, so we put a stop to that nonsense. Now the home care agency said they would come once a week.
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