Or, The Play Samuel Beckett Couldn’t Get Published, Because It Was Too Absurd
This has been a strange and infuriating year for me so far. Last week, I recounted the whole sordid story to a friend over lunch, and she suggested I write it all out so it could be shared around.
This is also a pretty good summary of why, as I write this on September 22, Revel and I between us have about $20 to our names. Take a deep breath, and break out your funhouse mirrors.
First, some context: the last couple of years were already difficult. In 2014, my 20-year marriage ended. I began a new relationship, with Revel Smith, but within three months we were both dealing with serious new health challenges on top of our existing ones. That resulted in seven months of homelessness and pretty much the destruction of both of our savings and credit.
In 2015, we finally found housing in February that could accommodate our health issues. Alas, the next month I landed in the hospital with an infection in my right ankle, one of the risks of my chronic immunosuppression. It got into the ankle joint, went septic, and I got very, very sick. It would take eight months, three hospitalizations, and two long periods of home IV abtibiotics. At one point they were talking about amputation. Thankfully, that didn’t happen.
Enter 2016. Believe it or not, this is the short version.
With a new term and some changes to the staff, the consulting work I’d been doing for city councilperson Kshama Sawant’s office comes an end, leaving me effectively unemployed. This will become more important again in July.
My wallet is stolen, including my drivers license, Medicare and Social Security cards, and a bunch of other cards.
My old, trusty VW Jetta finally gave up the ghost, and a friend generously sold me, at nominal cost, a 1988 Ford pickup truck as a replacement.
When I go to the Department of Licensing to get a replacement drivers’ license, they inform me that it’s been suspended due to failure to provide a visual exam. (This has happened to me before, and to other friends; the DoL seems to be very sloppy about notifying people subject to this requirement as to when it’s due.) As a result, they won’t issue a new temporary license until I get a form filled out by my ophthalmologist. Because of my transplant-related issues, I get my eye care through UW hospital, and the next available appointment isn’t until March.
When I go the next day to get the title transferred for the truck, I’m told I can’t do it without a drivers license. Which I can’t get until March. I’ll have to pay more for transferring the title late, but at least it’ll get done before the truck’s tabs expire at the end of March.
In December, the home IV antibiotic course I’d been on had seemingly healed my long-running ankle infection, but it erupts again and I land back in the hospital. On the third day, hospital admissions asks me if I have new insurance, because my secondary health insurance after Medicare is no longer valid. This comes as a surprise.
I had switched from my long-time credit union to a new credit union closer to my new home in December, and I had notified the health insurance folks so that their monthly automatic payment would move to the new account. Instead, it turned out, they’d tried the old account again in January. When that didn’t work, rather than notifying me, they “assumed” I no longer wanted coverage and cancelled my policy without telling me. I found this out while I was in the hospital. Moreover, I needed another round of home IV antibiotics upon discharge, and without that coverage the home health care company responsible for setting it up and supplying the antibiotic wanted payment up front. I couldn’t be discharged until the home health care was in place.
And, so, I spent two extra days in the hospital, working the phones. The secondary health insurer grants my appeal of its policy cancellation in record time (since it was their fault…), but wants two months’ payment up front to restore my policy. The new premiums for 2016 are $643 a month, or, sans work, about 60 percent of my monthly disability income.
The home health care outfit agreed that if I gave them $600 to hold for the first week’s services, they’ll refund it once the health insurance policy is restored. In order to get discharged from the hospital, I scramble to borrow money from friends to pay off the health insurance and the home health care – because, being newly unemployed, this is $2,000 I simply don’t have lying around. Only in America.
With everyone paid off and the insurance restored, I finally get discharged. The final hospital bill is $31,000. The home health care outfit doesn’t refund the $600. Eight months later, I’m still waiting. More on this in June.
That was January.
Thankfully, the home antibiotics actually heal my ankle for good this time. The central line I was using for the IV treatments gets taken out.
While in the hospital, I’d applied for Medicaid as a way to avoid the insanely expensive premiums I’m now paying for secondary insurance. That comes through, retroactive to January 1 – this will be important later. My spenddown – essentially, the money I need to spend out of pocket before Medicaid coverage kicks in – is $1,100 for the period January to June – more money I don’t have, payable up front – based on the Sawant income I’m no longer getting. The previous insurer says they’ll refund the three months’ premiums, totaling nearly $2,000, in March, but only after I pay the March premium.
The insurance refund doesn’t show up. I need that money to repay my friends. I borrow more money instead.
My 91-year-old mother, living in rural Georgia, has a stroke. It’s dicey for a while, but eventually it’s determined that there’s not much permanent damage. I’d visit, but I have no money for air fare and no drivers license to rent a car anyway, so it would be logistically difficult to get there from the airport in Atlanta.
My ophthalmology appointment gets postponed. Twice: once because she goes home sick an hour before my appointment, and a second time when a clinic staff meeting gets scheduled for the same time as my appointment. (At least they called me on that one.) I’m now scheduled in April, meaning I can’t get either a drivers license or the truck’s title transferred before then. At the end of the month, the tabs expire.
My building doesn’t have parking; I can park on the street, though, because my disabled placard exempts me from the meters that line every street in the neighborhood. So I don’t get parking tickets for that. I can, however, get tickets for failing to display current tabs. Those begin, every day or two. The first dozen or so, at $47 a pop, are from the same parking enforcement officer. I request a hearing on each to explain the circumstances.
I finally get the ophthalmology appointment. I pass the state-mandated visual exam. The results, per DoL instructions, are faxed to Olympia, where they will take another two weeks to process.
Meantime, the exam itself turns up problems. My immunosuppression means I’m prone to cataracts. I had surgery a few years ago when one developed. That left me with an artificial lens that can’t get cataracts. However, now I’m starting to get a cataract in the other eye. Plus, the eye with the artificial lens is developing a membrane underneath it; now I’m told that this, too, is a common complication. My vision is still OK in each eye, but they’ll require surgery. Surgery can’t be scheduled until July, but I’m assured that this is just about perfect, because by the membrane and cataract will be bad enough to need the surgery anyway.
In the last week of April, the $2000 from my previous secondary insurance finally arrives, a month late. I use it to pay back some emergency loans and to cover May rent.
I continue trying in vain to get my $600 back from the home health care company.
The visual exam form is finally processed in Olympia, so my license is no longer suspended, I’m valid, and I can finally go into the Department of Licensing to get a replacement drivers license.
However, the clerk noticed I was limping when I walked into the office – a longstanding balance issue that has nothing to do with my ability to drive. No matter; she decides I need to pass a field test to show how I “compensate” for, um, uh, my difficulty walking while I’m operating a motor vehicle. And she schedules me for a test – in Everett, because the two closer offices are booked out for two months, longer than the period in which I’m supposed to take the field test. And even though my license is perfectly valid unless I don’t complete the field test by a given date, she won’t issue me the replacement card for the one lost in my stolen wallet four months previous.
Moreover, you have to supply your own vehicle for the field test at a state office, and I can’t legally drive mine. The net effect is that the DoL is insisting I get the vehicle tabs before I can get a drivers license, and the DMV says I can’t transfer the title and get current tabs until I have the drivers license. Got that?
The magistrate at he first of what will be four separate hearings for batches of parking tickets hears all this and laughs. The result is that I have to pay one $47 ticket, and she throws out the other 19. Seriously.
I put the printout from the hearing of a full page of “dismissed with prejudice” lines under my windshield, along with a short “to whom it may concern” note. It doesn’t help. I keep getting tickets. The second and third hearings will go pretty much like the first; #4 is coming up in October.
My mother lands in the hospital again with extremely high blood pressure. She’s got medication for it, which she remembers to take, sometimes.
The good news is that my overall health is much better. The function of my non-native kidney, transplanted 22 years ago, is declining over time, though, and so with the ankle infection resolved we can start checking the different boxes and getting the different tests and exams and hoops completed to make me eligible for the transplant list. Which has a four-year wait list right now.
My parasitic friends in the health insurance industry are quiet. Too quiet.
I cancel the Everett test rather than risk driving 30 miles illegally. I reschedule for a closer office, in the hopes that I can find a friend’s car to drive at that time, but now the membrane in the eye I already have an artificial lens in is getting markedly worse – to the point that I shouldn’t be driving until after my surgery in July. I voluntarily surrender the license I don’t have a copy of anyway for medical reasons, which will make it cheaper to reinstate down the road than if I hadn’t completed the field test in time.
Remember the home health care company that owed me $600? They still owe it, but out of the blue and four months late they send me a bill for another $4,000 for the other weeks of treatment. I’d given them the information that my secondary insurance switched to Medicaid, retroactive to January 1. Apparently Medicare won’t pay for my particular antibiotic for home infusion, and rather than billing Medicaid to recover it, they bill me. Many fruitless phone calls ensue.
Medicaid has a midyear “eligibility review” due June 15. They’re backed up processing the paperwork by a month, meaning that my secondary insurance will be cancelled for the first half of July and then, presumably, reinstated once they get around to processing my form.
I also want to get the spenddown reduced or eliminated, since I stopped working for the city in January. This requires going to the city’s HR office three separate times to get the paperwork successive DSHS agents insist is required to prove it. This is finally done in early July. Fortunately, my eye surgery isn’t until the end of July. I’m now essentially blind in one eye – the other one still seems fine – but at least I won’t have to pay for the surgery out of pocket. Probably.
July 1 comes and goes, and with it, my Medicaid coverage. They reinstate me three weeks later, with a different spenddown amount that reflects my lost incom: $2800 for six months, or 250 percent more than what it had been. So much for having greatly reduced income. This means I’m supposed to pay all of the my three months of disability income up front to buy the immunosuppressant drugs that keep me alive. That’s without paying for, I dunno, food, rent, transportation, or anything else. This is insane. I immediately appeal.
Three days later, I get a notice in the mail with a new spenddown total: $4800, or nearly twice the amount I already appealed as insane. Both Revel and I burst out laughing at this, because, well, what other rational response is there? I’m supposed to spend nearly $5,000.00, or five months’ income, up front, on the drugs that keep me alive, before I can get coverage. It’s terrifying. It’s a problem.
DSHS schedules the appeals hearing for mid-September, meaning I need to cover those costs for two and a half months (retroactive to July 1) even if it turns out that they were completely wrong.
I have another court date with 15 or so parking tickets, which are similarly reduced to near-nothing.
The main impediment to my getting on the transplant list is that I need several thousand dollars (at least) of dental work done, which Medicare doesn’t cover unless it’s in the emergency room. Medicaid, however, will cover it. But now I’d need to spend that several thousand up front first. So that’s on hold, too.
My ophthalmologist decides to do the two eye surgeries separately. The one that’s gotten bad is first, and it’s successful: membrane gone, and once it heals I’ll finally be in business again for the truck/driving nightmare, too.
Are we having fun yet?
I get the clearance from the ophthalmologist once my surgeried eye has healed, and the DoL’s licensed private agencies include a driving school that’s both bus-accessible and allows you to use their vehicle for the field test. But what with the lack of secondary health insurance, on top of everything else, now I can’t afford the field test until September.
The other eye surgery is scheduled for October. So far, the vision in it is still good.
My elderly mother lands in the hospital again. She badly needs to move to assisted living, but can’t do it. She’s still waiting for her long-term care insurance to reimburse her for the home help she needed after her stroke in March. At least we have that in common. At this point it doesn’t seem likely I’ll ever be able to afford to visit her again.
Home health care is still sitting on my $600, and I stop pressing them on their $4000 bill for fear they will bill Medicaid, Medicaid will turn them down as less billing an amount less than my insane spenddown, and then I’ll have no hope of avoiding responsibility for the bill. Short of bankruptcy, which I should probably do at this point but I don’t have the bandwidth. I’m too busy trying to raise money for prescription drugs, food, and other assorted luxuries.
And this brings us to…
I pass the field test.
I go to the DoL office, which informs me that I need another visual exam form filled out by ophthalmologist.
After chasing her around Harborview and UW for three days, I finally get it, so now I should be in business, right? Get the drivers license (after eight months), get vehicle tabs, all set.
The DoL informs me that since it was a “re-test” – because I cancelled the Everett test back in June – I can’t use the state’s own contracted private agencies for the field test. It has to be a state office. The earliest date for one of those is about exactly the same time as my other eye surgery.
And it doesn’t matter anyway, because the city tows the truck. At some point one afternoon (I’d checked it at 10 AM, and also the previous night), the street parked on most days sprouted “no parking 6 PM to 6 AM” sandwich boards for that night, and when I looked that evening, the truck was gone.
Dunno how much the ticket is for – it went to the previous owner, I imagine – and while I’ll fight it, I’ll likely lose since it involves proving a negative. The city has to post those signs at least 24 hours in advance, but somehow I didn’t think to take and time-stamp a photo of the sidewalk with no signs earlier that day.
And I can’t get the truck out of the impound lot, since 1) I still didn’t legally own it, 2) I can’t drive it off the lot with no drivers license, and 3) I can’t afford the towing and impound fees. It’s gone to auction now.
Next up, ironically: parking ticket hearing #3. This time, noting my poverty, the magistrate offers me minimal community service hours instead. I agree.
The morning of the DSHS appeals hearing, a Tuesday, arrives. I call early to confirm. “Oh, we don’t do hears on Tuesday any more. Now they’re on Monday. Yours got moved to next week.”
Meantime, I’d changed the spenddown period to three months from six, making the upfront costs less if something catastrophic (like, say, two days in a hospital) happened. That means I needed to apply all over again by September 15. Done – though I had to walk the application into the DSHS office because I couldn’t afford to fax it. I chatted sympathetically with the female security guard, who was gently trying to usher a seriously disturbed, apparently homeless woman out of their office.
Six days after its originally scheduled date, I have the appeals hearing. It goes reasonably well – I went pro se, but it helped that the DSHS attorney apparently hadn’t bothered to read the 80 pages in records they’d sent me ahead of the hearing. I had. (It included nuggets like a using a random and much higher number for my self-employment income, rather than the documented figure I gave them.) However, I won’t find out a decision until early next month, and I expect that most of the insane amount, but not all, will be upheld.
By then, I need to decide whether to go back to my old $643/mo secondary insurance – expensive, and it doesn’t cover dental, but they respond to problems in a timely way and the policy does cover everything else, including essential drugs a lot of plans won’t cover; apply existing health debts (like the home health care) to the 4th quarter spenddown, which is only a temporary fix and leaves me on the hook to a bunch of additional debtors – or see if I can find some sort of charity program to help with the drug costs.
That was Monday. It’s now Thursday afternoon, and between us Revel and I have $20 to last us until we get our monthly disability checks in ten days. Between my fruitless efforts to save the vehicle (so that, once legal, I could sell it to help with other expenses), the insurance nightmare, the health challenges, and a generous helping of random bullshyte, I’m broke and beyond frustrated.
Shortly I’m planning to launch a new media project – because there’s a need for it, because it has the potential to at least partly help defray some of these expenses (and I’m as tired of begging my friends for financial help as you are of hearing it), and most of all for my own sanity. I’ve spent far too much time this year dealing with all this absurdity – believe it or not, this is the abridged version – and far too little tine doing things like reporting and commentary that I enjoy and am good at.
If you’ve read this far, thank you for caring and for your forbearance. If you can help financially it would help, of course. (There’s a PayPal button at lower right, or PM me directly.) The less time I spend on all of this, the more I can spend writing about things more people care about.
But even more, this is a cautionary tale. When I hear about lazy poor people, or plans that will, say, magically house all the homeless if only they follow these 630 simple steps, the first thing I think about is that people who’ve never had to navigate these systems assume that they work the way they’re designed to, and that if people aren’t helped by them it’s the individual’s fault. Sure, in hindsight, I would have handled some of this year’s situations differently, but only because I wasn’t cynical enough. Which is saying something.
And I doubt it would have helped much. These are systems designed to appease the consciences of those who design and fund them, not to meet the needs of those who need them. As our wealthy local and national economy leaves more and more of us behind, the only real security we have is each other.