ianunderhill vs. cancer (RIP Nick)

Oh happy day! Cheers to ianunderhill!

IMAGE(http://farm2.static.flickr.com/1150/1475449263_62f23c1172.jpg)

Ooookay, spooky ferret is spooky, but still, great news! Going back to work, man, that's the best.

Tanglebones wrote:

Enthusiastic Hedgewizard doppelganger is enthusiastic

Great to hear the ongoing awesome news, ian!

I think I resemble that remark.

But I remain enthusiastic, nay, ecstatic about the positive trend you're on!

f*ck yeah. Made an already laid-back, good Saturday even better. You rock, dude.

Robear wrote:

Ooookay, spooky ferret is spooky

Spooky? It's an excited and happy disco ferret! I guess I'll have to prove it by linking the video he's from now.

Anyway, point is, it was in celebration of the awesome news this thread is rapidly filling with!

Ian - when you view the preceding video, rest assured your meds have not kicked in. We experienced the same thing.

WOOOOOOOOO

That makes more sense, Ferret.

And yes. WoooooooooooooT!

(Advance apologies to the IRC crowd, who have already heard quite a bit of this. Those of you who dislike long stories will probably want to skip this one. Sorry.)

So things suddenly aren't so great. While I'm thrilled about the apparent progress in my treatment, life's started turning into a stressful nightmare. Up until recently, everything's been cool with the hospital because I was classified "Medicaid pending", and I'd done all the legwork for applying for the state to help me out with all this. In February, shortly before I moved, I received notice from the Illinois Department of Human Services that I'd been approved. This notice came in the form of a big envelope stuffed with a bunch of hard to understand, jargon-laden materials and largely meaningless numbers. Being the capable, on-top-of-it kinda guy I am, and having free time on my hands, I did what any of you would've done: hit the net and started trying to find out what it all meant. I learned that there's a thing called "spend down", which is sort of analogous to a health insurance premium, and that, based on my bank balance whenever they started processing stuff, I was to be subject to it, as even though I don't make Real People Money (tm), I'm still such-and-such above the poverty line; to meet spend down, you have to either pay that amount or at least submit bills up to that amount that you intend to pay that month, and then Medicaid picks up the rest. Not the greatest news, but hey, I knew from day one that cancer would mean unfortunate expenses. And things weren't all bad, because since I haven't been working since August, and have had no recurring source of income, there'd at least be a period at which the spend down amount would reduce to correlate with the fact that I haven't been working. Reading through the documents I'd been sent, it even said so: as of January, my spend down amount is supposed to be $0.00. "That'll change depending on how things go with returning to work," I told myself, "but I'll deal with that when the time comes."

Well.

Two Mondays ago, I went into my hospital-of-choice's cancer clinic for treatment, as usual, and was waiting a real long time following my visit with triage and the regular blood draw for labs. Someone from the pharmacy, which prepares the drugs for my chemo, came out and told me there was some sort of problem with processing payment info re:Medicaid and that she was looking into it. After about twenty minutes, I got called back to the infusion area, where my infusion nurse and another person from the pharmacy told me about the problem again. The hospital didn't know my spend down amount and this was apparently presenting a snag; they needed to know what it was and had to hear it from IDHS or see it documented. They called my local IDHS office, I called my local IDHS office, and nobody was answering the phone. We decided to reschedule my treatment for Wednesday, as that'd give us all time to either hear back from IDHS or have me bring in my big stack of documents from home, while the info obtained from lab analysis of my blood draw would still be accurate enough to where they wouldn't have to do that again and reconsider whether or not to treat me. I went home bothered but thinking everything would be fine.

I returned Wednesday with my papers. They had me visit the pharmacy right away, I provided the document indicating my spend down amount, they photocopied it and agreed to treat me. I went home and things were mostly as normal. We increased my dosage a bit this last time, and I felt crappier than usual, but otherwise, good to go.

Until yesterday. I got a friendly call from a person over at the hospital pharmacy telling me that she'd tried putting my stuff through again multiple times and it was still being rejected. I told her that IDHS hadn't returned any of my calls the previous week and that I would be making a trip to the local office to get things sorted out. She was very understanding, and I took the time to make an inquiry about how the hospital pharmacy is handling billing now that I'm Medicaid approved. Apparently, they haven't actually generated bills because there's been no payment so far, and the way to get billed is apparently to pay towards spend down. "Okay," I said, "I'll double-check that that number's accurate and find out what I have to pay when I visit the local IDHS office tomorrow." I thanked the woman for her time and hung up. Good, responsible behavior on my part, and a courteous phone call that wasn't embarassingly condescending despite the unpleasantness and confusion.

Having been on LINK (the Illinois version of food stamps) way back when I did my AmeriCorps year, I wasn't exactly looking forward to visiting an IDHS office again, but holy hell, what I experienced earlier today was some nightmare cartoon version of the IDHS experience. After going through the regular intake queue and funneled into the waiting area, I heard my name called after about an hour. Not a bad wait time for state services, right? I looked up to see this hobbling, squinty old wreck of a woman motioning towards me to go over to a table towards the front of the room. I walked over, sat down, and from that moment, wasn't allowed a word in edgewise. Mind you, it's not that she was clearly hard of hearing, probably legally blind, or a little bit slow on the uptake, it's that she was hostile towards me. She asked me if I'm receiving income; I replied that I wasn't currently but (for the sake of disclosure and hopefully saving some time) I was going back to work on a trial basis this coming weekend to see how things go. She started grilling me about details about my employer, wages, etc. and started doing calculations on a sheet of paper with my own pen that she took out of my hand. What's important to note is that, at this point, I haven't gotten to say a damned thing about why I'm there. Grumpily, she told me that I'd be facing a huge new spend down amount, bigger than when I had any money before; I responded that, as I'd said, all this info was tentative since I'm still sick, still receiving treatment, may go off work again for more surgery if necessary, and that the number of hours I'll be working may well be inconsistent because of all this. "Well, you'll have to bring pay stubs when the time comes," she snapped, "thanks for wasting time by saying you're employed when you're not." She then got up, walked over towards the intake area, had someone do something on their computer, and came back. "Now I've taken the code off your file. You should be good for March." "Wait," I said, "what code? I'm here because the hospital's not accepting my Medicaid when I just got approved last month." "We're taking the code off your file. You'll be good for March and April. We could've saved time if we'd gotten to this sooner. Go home, you're done today." I was motioned towards the door. I don't have any idea who this woman was - was she my IDHS case worker, or just one of several who deals with people coming in for Medicaid matters? There was no one I could ask, as the only staff were either at the other desks helping people or handling the intake queue, which at this point was a good twenty people deep, and the waiting area had filled up considerably while I'd waited previously. So I got up and headed out.

I know it probably sounds like a fabricated or severely skewed story, but I'm not exaggerating any of this, I swear. From what I've been able to piece together since leaving the office, the "code" on my file must have had something to do with them being unsure about my employment status or income, and that maybe the change in spend down indicated on the aformentioned documents to $0.00 (a weird value for such a program - "Hey, $0.00! I'll happily pay that now!") had triggered all this. I'd like to talk to somebody else and ask them some questions about all this, but it's the same story as before when I call the office - I either get directed to my caseworker's voicemail or their supervisor's voicemail (with both, all previously left messages have gone unanswerned so far) or the phone just rings and nobody picks up.

Monday, it's back to the hospital to see what happens. Being aware of the chicken/egg situation re:billing, I'm guessing that the best case scenario is going to involve me forking over money. Hey, fine, not fun, but I'll do it. The hospital's been great about answering all my questions with their side of things. The Medicaid/IDHS side, meanwhile, is just a big swirling murky morass of mystery, and I have no idea what's going to happen. I've spent most nights this week really stressed out and haven't been able to sleep without taking Ambien, which I've backed off on now that I have even less an idea of how I'll get more if I run out, now that I'm at the apparent mercy of the state.

Never being entirely without a plan, I've decided that my next short-term course of action in the event of further difficulty is to call up the local office of the American Cancer Society and ask them for guidance and/or other resources. I've looked at the IDHS side of things and there's a procedure for filing a "grievance" in the event of an IDHS staffer being rude or unhelpful; if the woman I dealt with today is my case worker, however, and I can't get her supervisor to pick up the phone, I can't see that really being worth my time, as I have my cancer now and need results yesterday.

I'm really sorry for the hideously long story, but this whole business is wearing me out, and really hard to face after things seemed like they were going great - my chemo was working, I'd moved into a really good environment, and now it's extra daunting since I'm hopefully going back to work and my time will be suddenly be costly again (unlike the last six months, time not working or not in treatment is going to be a liability for me). I'm also concerned about the longer-term issues if I can't get IDHS to figure my stuff out - as I've said before, my biggest fear in this whole scenario isn't so much dying ahead of schedule (I've thought long and hard about that, and I've made peace with it as a possibility) as it is dying slowly and painfully getting no or inadequate treatment in isolation down at my parents' place in Florida if I can't get help.

If anyone has any advice that goes beyond a flippant "take names and kick some ass", I'd really appreciate it.

Unfortunately I haven't gotten advice but don't be sorry for the length of the story.
Sorry you are caught in this Kafkaesque situation. You'd think "I'm dealing with cancer right now" should be able to comfortably be sitting in the number one spot on the list of life's frustrations rather than battling with billing.

So since I've got nothing to help on that front, I'll just chime in again that I'm glad so many other things have been moving in the right direction so you have more strength to deal with this.

Thoughts are still with you. Take care.

Damn Ian, I have no advice on the main situation as I've no sweet clue how the system works down there but I can imagine what it would be like to deal with financial issues and those sorts of people on top of everything else - truly dreadful.

Another reminder though to embrace this sort of writing, no need to feel guilty or apologetic about it, I know from the other side that it can be to get past those feelings but trust in us.

In the meantime I hope IDHS gets their head out of their arse and helps you sort this out asap so that you're able to get back to focusing on your health. Certainly give the ACS a call, they may have someone there who can help you sort things out more quickly or else direct you to alternative routes.

That pisses me the hell off, Ian. I'm going to poke my nose around and see if there is anything I can find out. I don't know sh*t and I have no connections, so no promises or anything.

Ian, we got through our billing issues concerning the girls' birth by threatening to lawyer up (to the point I was speaking with a few that I knew and having them consult). Once we did that and made it known, things got put into line fairly quickly.

Our problem was our bills were all wrong and some duplicated and just general mismanagement of our account. Your problem is very different in that it simply appears that people are being dicks. There are a couple ways to handle that:

1.) You've already tried to get your case worker's supervisor, that's been a bust. Perhaps attempt a different location and a supervisor there? Try to find somewhere you can escalate with until you get to someone that's in charge of the office you have a problem with.
2.) Email/Call/Write to local government officials. I know it sounds weird but a surprising number of members of local government are there and actually want to help. It's worth a shot and a phone call from someone like that can help a lot.
3.) Bring your situation to local support groups. There is NO WAY that you're the first person to go through this.

Keep putting feelers out and eventually you'll find the guy that knows the guy, y'know? That's still how things work most of the time.

Good luck. And remember, if nothing else, we're all here to help.

I'm going to tell ZaneRockfist to take names and kick ass. To you ian, I like your thought of contacting ACS for guidance. I think you should also go up the chain of command at the state agency. In my professional opinion as a civil servant, you experienced an unacceptable level of service. No one returning your calls is abominable, and that's just the beginning of what's wrong. I wish I could make the calls for you. I know you have better things to do than call an unresponsive state office all day.

Edit: What Oily said!

Wow, hell of a story, Ian. Really sorry to you have to deal with that as well as fighting the cancer. I, as many others, really don't have any suggestions of what to do or where to go as it's all as nebulous to me as it is to you. All I can chime in with is "That's just bullsh*t!".

I might have actually f*cking raised Hell right then and there until they called security. That wasn't rude, that woman was a bitch. Hell, I'd go so far as to refer to her with the dreaded C-word. That's no way to treat someone. You hate your government paid job? Boo hoo. That's life. Don't take it out on someone trying to get some answers.

I get the feeling so many people go in there with dishonest intentions that these employees forget that some people are completely earnest.

Wait a minute Ian. You didn't go down on both your knees and thank this woman who helped you out so much in the end!?

ok ok, end of sarcasm..this is bullsh*t of course, from the highest order! Maybe you can visit a different office next time?
Otherwise, I would actually ask for a manager, or the next level up, whatever that might be.
People shouldn't have to put up with something like that.

But, maybe it all comes down that this woman really needs to get laid....just saying....

GL!

Thanks for the empathy and suggestions, everyone. I'm too tired and sick of thinking about this mess to say a whole lot more on the subject today, but I do want to get the following out:

-If it's not clear from the above, I don't actually know that anything got sorted out today. Yes, this uncooperative person said something about a "code" on my file and me being "good" for the next two months, but I don't know for certain that what she was referring to had anything to do with whatever's screwed up with my Medicaid benefit from the hospital's perspective. I'd like to assume it had something to do with it, but since I didn't get to ask any questions, I can't be sure. "Piece together" above means "my best common sense speculation", which doesn't mean jack in the face of reality.

-It seems that going to another field office isn't an option. While in the intake queue, I overheard one of the staffers tell the woman who was in front of me that they couldn't handle her case because it fell under the jurisdiction of the field office where the case was originally opened, and that she would have to report to that office. Since I originally applied via documents that were ultimately faxed into my neighborhood's corresponding field office (which is actually the same one serving my current neighborhood; when I moved last month, I moved less than two miles from my old place). So while I'm not sure about the woman who [didn't] help me today, it looks like I'm stuck dealing with this place.

-Going over people's heads is obviously the next thing to do in dealing with the state, but I have to figure out who to go to. Blind Evil has suggested to me that the best way to deal with any state issue is to get in touch with my state's equivalent of a congressional liaison. That sounds like a noble quest, but also a bit of a quixotic one. I'd like to at least find out who's next up in the chain from the levels I've been trying to deal with. I've poked around and not really been able to find anything that seems to meet either set of criteria. Granted, I may be failing because I'm still freaked out and worried.

-Yes, before anyone gets to stating the obvious, it was totally my fault for not being smart and getting the name of the unhelpful person. Going forward, I'm going to take a big old swallow from the imaginary flask of courage, get my senses about me, and find out who I'm talking to, so that at the very least, the spectre of accountability might linger in the background and just maybe make anyone not digging their gig so much think twice about being a jerk to me (unlikely, I know, but if I don't have names, I don't have any recourse).

Sparhawk wrote:

Wait a minute Ian. You didn't go down on both your knees and thank this woman who helped you out so much in the end!?

ok ok, end of sarcasm..this is bullsh*t of course, from the highest order! Maybe you can visit a different office next time?
Otherwise, I would actually ask for a manager, or the next level up, whatever that might be.
People shouldn't have to put up with something like that.

But, maybe it all comes down that this woman really needs to get laid....just saying....

GL!

Uh, what the hell?

Call your state representative's office. I guarantee you'll get a helpful staffer. That's what they're there for.

Start here: http://thomas.loc.gov/home/state-leg...

MadGav: Yeah, I wasn't exactly thrilled about that, despite how I got treated by this person. For the sake of not derailling...well, uh, my thread into a P&C-style pissing contest, can we just assume Sparhawk was trying to be funny to calm me down a bit and thus had good intentions, regardless of the remark in question being in poor taste? I'd be kinda grateful if we could do something like that. Really.

BadKen: thanks! Regrettably, the link for Illinois on that site (http://www.illinois.gov/government/g...) 404s. I can go up to http://www.illinois.gov/government/ and get a long list of assorted stuff, but not having had to contact a state rep's office for anything before, I'm not exactly sure what I'm looking for. Any idea? Sorry if this seems like a dumb question, I'm pretty overwhelmed right now.

What's your zip code?

Try this: http://www.elections.illinois.gov/Di...

There's a search by zip code in the Silverlight desktop version. And the mobile version I think, but I didn't actually open it with my phone. Actually the mobile phone version looks decidedly more streamlined. Screw Silverlight.

60647, which, with my address info or the full nine digit zip, yields http://www.elections.il.gov/district... (I used the mobile version, as I'm posting from a Linux box and the Moonlight plugin doesn't seem to like the Silverlight app). Multiple offices come up for multiple individuals. I'm not sure who I should try/try first.

Try your state rep's local office in Chicago (not the one in the state capital).

Representative District #39

Official: Maria Antonia Berrios - Democrat
Office: State Representative
Email: repberrios39@gmail. com
Website:
Contact Information:

290-S Stratton Office Building
Springfield, IL 62706
Phone: 217-558-1032
Fax: 217-558-7112

2847 N. Pulaski
Chicago, IL 60641
Phone: 773-736-3939
Fax: 773-736-3940

Awesome. Thanks again, BadKen!

Might be time to call WGN and let them make a human interest story of it. Public shaming seems to motivate state-level bureaucracies.

Hmm...interesting idea clover, but it's not one I'm particularly comfortable with - I don't want to be in the news, whether as an obituary or otherwise. This is all stressful enough without being exploited by news media and those who see fit to publicly remark on its output. [Clumsy A Clockwork Orange analogy featuring predators on both sides goes here!] I'd also be concerned about people concluding my boss is some sort of monster for not offering health insurance to his employees when the truth has more to do with the realities of being in a low-margin, largely seasonal small business - not just for job security, but because it's actually true in this instance, and I say that while holding personal opinions that fall on the very left end of the healthcare question.

And yes, it's another restless night. I don't know how I can be so exhausted from all this and yet unable to sleep at the same time. I sure could use a vacation from cancer.

Re: the name of the staffer who treated you poorly; if you happen to know what time you were there that date then I would imagine your description of the person as per your story would narrow it down to very few possibilities, if you do end up going that route then the next person up the chain would likely know who you're referring to.

One thing good managers will (in my experience) do if they can't figure out who it was specifically from your details is hold a general staff meeting reminding everyone that this is a customer service position and being a crappy person won't be tolerated.