I love it when I hear that some of you are worried and/or wondering what's going on when I don't post for a while. It gives me the motivation I need to make this a priority again. And it means that I am loved and cared about. So, thank you!
It has been very difficult to find time these past few months. Honestly, I feel like I am barely keeping my head above water.
I have so much to update you about. But, I'll start with today. It was kind of stressful. I need to start with what happened a month ago.
Last month (actually about 5 weeks or so) I received a phone call from my nursing agency. As of right now, Harlie qualifies for 10 hours of nursing per day, seven days a week. Each nurse can only work 40 hours or less per week. I have three nurses. One works days for school, Monday through Friday (40 hours). The other two work evenings and/or weekends when needed.
I also have like 360 respite hours to use however I want to throughout the year. The only time I use it is if I go over the 10 hours in one day. So, if on a weekday (when Terri has gone to school with Harlie) we have something to do, I get Dawn or Brandy to come over and respite hours kick in. It doesn't happen every day, of course.
So, back to the phone call I received... I was told that due to billing issues with Medicaid, the nursing agency was no longer billing for respite hours, so I could not use them. Now, I am still entitled to those hours - but the nursing agency won't allow my nurses to work them.
While this was VERY annoying, I had full faith that this issue would be resolved soon. After all, a lot of families and patients rely on these hours.
Well, I've been busy, it's been crazy, and I kind of forgot about it. But, we have a busy few weeks ahead and I need my respite hours to make everything happen (Christmas parties, shopping, scout nights, etc.). So, yesterday I call the agency to see if the issues were resolved.
No. Not even close.
Now I'm frustrated. And I really don't think they understand (or care) how this affects us. I need my hours. Period. She said she'd talk to the owner and get back to me.
So, I call my case worker with Medicaid. I left a message. In the meantime I'm trying to figure out a schedule with my nurse to work on Friday night.
I hear nothing back. So, I call again today. Both places. My case worker with Medicaid is wonderful and she said, "Oh, no. They cannot do that. I'll call them." Awesome.
In the meantime, my nurse said that she was told by the nursing agency that her hours have to be "approved." WTH? At this point, I've already figured out to move our plans from Friday night to Saturday night so I don't have to worry about the hours conflicting with Terri's. So, I call the agency (again). I talk to this guy who I've never spoken to before. He said that they want their nurses to work "regular shifts" and he has to know where his nurses are and when they are working. If I relayed the whole conversation, it would take me an hour to type it.
Here are the highlights:
If they work a shift that was not a shift he pre-approved, then they might or might not get paid. Yes he said that. Even if it is within my 10 hours I already am allowed to have. WTH??? So, if our plans change at the last minute and she works 6 to 11 instead of 5 to 10, she might not get paid? Are you kidding me???
Back to his "regular shift" comment. Don't even! You want your nurses to work regular shifts? Well, guess what? You don't always get what you want in this life, Mister! TRUST ME! I want a regular life, jack ass! Cry me a freaking river. I told him my life is not regular and it doesn't work like that. And I said, "Isn't it about what the patient needs, not what the agency wants?"
He said that their nurses represent the company and that he needs to know where they are. Um, they are here for 10 hours a day. I told him I brought you my nurses!!! They went to your company to work in my house, with my child. For SIX years!!! I think we have it worked out.
I told him that this policy does not protect me or help me in any way. It is a burden. I cannot be worrying about calling him every time my plans change. Our life is hard enough - why are you making it harder??? And (I actually said all of this by the way, I'm quite proud of myself if you want to know the truth) you do realize that I am going to have to look into other nurses agencies, right? Then he said, "I understand." WTH??? For real?
The last thing I said was that I did not detect any amount of caring or concern from his end of the conversation.
My only guess is that this company is trying to phase out the Medicaid cases (probably because they don't make enough money) and is doing their best to force me to leave.
While I already started the process of finding another agency (and I know where we are switching to) it will take a couple of weeks to go through the process of hiring my nurses. UGH! Which leaves us SCREWED for the whole month of December. The WORST month of the year to lose any hours!
I am beyond upset and angry. He made me want to cuss like nobody's business.
And the worst of it???? The worst of it is that I can't do anything rash. I have to stay calm and deal with this crap. You know why? BECAUSE I FREAKING HAVE TO, that's why. I NEED them. I need my nurses. I need them in order to live my life.
And, you know what? It totally sucks to be a mom and know that I need other adults to help me life my life. Not just help every now and then. NEED them to LIVE.
I. HATE. THAT.
I am a strong, independent (well, I can't cook, so that's kinda bad), do-er. To NEED this "service" is simply heartbreaking. And it's not just about me. It's about my sweet little girl. My sweet little girl who didn't ask for any of this. Ugh.
Okay, the day got better with an emergency vet appointment for Rooney. Fabulous. He's fine now. Whew! But I promise I will fill you in with all the details tomorrow.
Thanks for checking on me and thanks for reading my ranting!
xo,
Christy
Subscribe to:
Post Comments (Atom)
Liver Update
Well, it's been like eight months since my last blog post. I started this post back in February. I think I'll just start with what I...
-
These past few weeks, my thoughts have been consumed with Murphy and his struggles in first grade. His teacher and I have spoken numerous t...
-
Hi. Here's another thing that's been on my mind - Harlie's heart. l think I'm just going to think out loud and hopefully it&... -
Hi. I've started this post several times. I get overwhelmed and put it down. I mean, if I get overwhelmed, how the heck are you going to...
6 comments:
OMGosh, I could have written this post! I am having almost identical issues with my nursing agency and I am furious that I can't get any help on the weekends, especially during December. If misery loves company, you have my company girlfriend. And you are right, you can't get too angry about the whole situation because it will consume you and suck all the energy right out of your body. If you are like me, you are having conversations in your head with your nursing agency and cursing them out while you are running, yes? It's the best time to get all the anger out!
xoxo
I'm sorry Christy, that sucks to have it all come to a head at the worst possible time of year.
FYI (Don't know if this will make you feel better or not.) in WA State there are few agencies that accept Medicaid because of the lower rate (Under $40 as opposed to $90). The agency that previously staffed us (under insurance) wouldn't take us back when we got the waiver approval and word was that they phased out all their Medicaid patients. Nice huh?! For us the respite that is provided through the state waiver pays out at the much lower rate of $14 (or so) an hour (and there is a long delay before my sister gets paid but luckily she doesn't mind too much.) This is essentially the rate of a babysitter. We have never been able to have a nurse provide respite, unless it's part of our 10 hours per day and it's just Ainsley she's caring for. Feel better? Probably not.
Okay, so I also have an idea for you. In our state the school district pays for the nurse for all school hours. So the payment comes from them and leaves the 10 hours per day intact. (Except for the portion she spends in our home which is logged separately.) is taken from the 10 Of course then the rub is that a nurse still can't work more than 40 hours per week. But since you use a different nurse for nights anyway it should work, that if the school provides the day/school nurse then you should still have hours for the evenings as needed. It might be worth inquiring with the school district.
Or, if you have a family member or friend who would be willing to be trained in Harlie's care he/she could be paid to provide respite. Also, here nurses are not allowed to care for siblings, so that is tricky anyway (and why before my sister got certified and trained for the respite program last year we RARELY went out since we had to arrange for a nurse and her to babysit the others) but maybe your nurses might be willing to be paid through the state for respite. The good news is there is no charting so it's easier. But I do wonder if the agency would make a stink if they knew.
They don't make it easy on us. Sorry for the super long comment. Maybe I should have e-mailed or called tomorrow instead. Anyway I hope you can work something out. And I saw your comment, of course you can link to my post.
This is so annoying, but you are so strong and you'll get through this. You will figure it out and be the voice and fight for all the other families who are getting dumped on by this new policy! I'm so glad you gave that guy a piece of your mind--he deserved it!
Our schedule is done for the whole month, a month in advance (so I had to put in January's requests last week). We can shift an hour or so in either direction, but most of the time we're stuck if things change.
...and we don't get respite hours, because we get nursing.
I'm with Susan though - school hours are separate from your home hours. The school is supposed to pay for those school hours (and that's a federal thing, not a state by state thing).
Susan,
In our state, the Medicaid waiver that Harlie is on only pays LPNs or RNs. So I cannot train a family member and have get paid. Other waivers allow that, but not the one Harlie is on.
I thought about the school thing, but here our school has to use a different nursing agency or something. When I looked into it, it was way complicated and it involved using multiple agencies and it just didn't work. I think the agency has to have a contract with the school, and the only agency that does is far away or something. Anyway, that wasn't an option, either.
My Medicaid case worker is on it and I think we're going to come up with a temporary fix until we can get it resolved permanently.
Thanks for the suggestions, though. You always have such good advice!
xo,
Christy
Janet,
I honestly cannot imagine having to plan out a month in advance. I don't know what I'm doing tomorrow, much less a month from now!!! I would be a mess trying to do that! I hate scheduling my life so much!
Post a Comment