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Stories of Frustration
Here are some stories about trying to get the care and aid that supposedly we (that's we in the Citizens sense) all are entitled to. Medicare. Medicaid. Food Stamps. Support from our city, state, national infrastructure. Bureacratic. Oh my.
What happened to Mom's Medicaid?
I have a friend whose mother is quite ill. She has advanced Alzheimer's. Schizophrenia. Diabetes. Heart disease. Last year she had emergency surgery for twisted intestines.
She lives at home with 24-hour attendants. She's basically incoherent now, but when she does speak, it's not in English. She came to this country in the mid-50s. Worked hard. Raised three sons.
Now the only income she has is SSI (social security insurance). It's a bit above the Medicaid cut-off so she has a "surplus". A surplus! 900 dollars a month in New York City is "too much."
What follows is a saga about trying to figure out why her Medicaid got cut off in January. My friend, by the way, is employed full time. So ALL of this had to be done in the interstices of his day.
Medicaid Journey -- the saga begins
This problem with Medicaid has gotten out of control and I am at my wits end. Here is my journey (I am sketching this out as much for myself as for you):
Mom’s home care attendant, Edith brought in mom’s Medicaid surplus receipts right before Christmas. They accepted the papers and, as far as we understood, everything was supposed to have been fine at that point ---->
January 19 2010
On 1/19/2010 I call the City's 311 service for help. They are polite and direct me to the Medicaid telephone line. ---->
That same day, I call Medicaid. I wait on line for a dog's age. They interview me for 4-5 minutes only to tell me that because of the HIPAA laws, they can't talk to me anyway. They can't even discuss with me what my alternatives might be. I propose a hypothetical situation to see if they will discuss that. Nope. They’re not buying it. So it’s back to the city's 311 service. I thought that HIPPA was supposed to help patients and citizens? In all the time that damn law has existed, I’ve been an advocate for mom and in the healthcare/hospital business. I have yet to see that law do anything but hinder care and give cover to people who would rather not work.. My day is done. ---->
January 20 2010
On 1/20/2010 I reach the city's 311 help line again... I wait and wait... they think and think... they put me on hold... a lot of head scratching goes on... they come back and suggest that I call the HRA Help/Complaint line at 718-291-41421. OK, onward ---->
I call the HRA Help line and after a 4-5 minute wait on hold, I get a friendly voice. A Ms. Foster – she is very courteous, helpful, kind and responsive. A perfect public servant. I explain the situation. She seems happy to talk to me and help until I mention that the Medicaid Line wouldn't talk to me because of HIPPA. Ooops! My bad! She clams up. However, she does point out that her office is not quite as strict abut HIPAA, as long as the caller can convince them that we truly represent the patient. She asks that I fax her proof. I tell her I will have to gather the proof at home and will FAX them the next day. She says that’s fine and gives me the number. Meanwhile, mom continues with her meds unfilled! ---->
I go home, again rifle through my files and come up with bank statements that indicating that I have Power of Attorney over mom's finances as well as a letter from
January 21 2010
On 1/21/2010 I FAX the materials as requested. I wait a bit and then call Ms. Foster. Surprise, surprise -- she's not in that day!!! WHAT? You heard me bub, she's not in. No matter, another very nice and helpful woman comes to my aid. I explain everything all over again, I get the same rote and scripted responses. She looks on the computer record and tells me that we need to submit to January's bills for mom to be covered in January. Of course, this makes no sense and is counter to what I have done for the last few years. Mom’s meds have always been covered as long as the previous months spend-down bills had been properly submitted which, in this case, they were. If we have to wait for the January bills/receipts to arrive from Bellevue Hospital, and for Medicaid Surplus to take two-weeks to process them (that’s how long the woman told me it would take to process them) that would mean that mom won’t get her January meds until February… or perhaps mid-February. What kind of coverage is that? No matter, this is government where reason, common-sense and logic do not apply (ditto for humanity). The VERY POLITE woman (I’m not being facetious, the women on this help line are crazy polite and interested sounding) is convinced of her logic and of the policy. I just need the matter to be resolved, so fine. As it turns out, even though she and the next two women I would speak two would later reiterate the same policy, their supervisor would later contradict them. What is more, my experience with Medicaid Surplus (and logic) also contradicts them. No matter how nice they were to me on the telephone! Their supervisor would admit to this days later. Anyway, I want to move forward and they give me the Medicaid Spend Down Office's FAX number for the submission of receipts. ---->
The same day (1/21/2010) I FAX the materials to the number given to me (917-639-0645). On the 2nd attempt, it goes through with no problem and I get a fax receipt. ---->
January 22 2010 (and the weekend)
On Friday (1/22/2010) and on Saturday (1/23/2010) I go to Rite-Aid to see if the problem is fixed and I can pick up mom’s meds. Nope. Medicaid is still not working. Frustration, bitterness, anger and despondency overtakes me. I am filled with rage -- almost enough to make me want to become a nut-bag survivalist or a government hating/sabotaging Republican. Still, mom is now approaching a week without some meds (the meds paid for by Medicare were fine, only the ones affected by Medicaid were at issue here). The very polite and helpful pharmacist gave me a print out with the rejection notice... it had a number to call for information... a different number than what I had been calling… and he suggested that I call them to find out why the charge was not going through. Aha! Perhaps this was another avenue I could pursue to get to the bottom of this. So I go home with the number ---->
I get home and call the number the pharmacist gave me. It turns out that it is for the company that processes Medicaid payments for the pharmacy. They too are very polite and sincere sounding. I don’t think it was an act – they really were trying to be helpful and nice to me. But, alas, they can not talk to me. They can only talk to the pharmacist. And so, they are useless to mom and me. No Meds for mom this weekend… and we are heading to a full week now and no one can explain this to me… solve this for her… phone messages that promise a return call go ignored.---->
January 25 2010
On Monday (1/25/2010) I call the HRA Help/Complain line again and I ask for Ms. Foster. Once again, she’s not in. I get a pit in my stomach knowing that I am going to have to explain everything again to a disbelieving but polite bureaucrat, and that she will feel compelled to go through the entire scripted litany (the “road to nowhere”).
And so it comes to pass: I get a new woman, also very courteous and helpful. Again, I have to explain everything from scratch. Again, she tells me they really can't help me.
Again they tell me I need to get the January "payment" in (payment? What payment? We always send in receipts.).
Again I remind her tell her that I’ve already done so.
Again she tells me that it will be a while before they get to processing it. That I believe, but what I want to know is: “why is this month different than the last 40 months?
And so I ask her” "what about my mother? This is the first time this has happened? We did everything right and now she is being penalized. How is it that for the first time ever, since we’ve been doing this, that we can't get the meds at the first of the month, but have to wait until things are processed by the end of the month (or beyond)."
She very politely gives me the impression that she thinks I may be mad and/or imagining things. Just as unlikely – she suggests that Medicaid may have, for some reason, been processing mom's claims incorrectly for all of these years and are now finally doing it correctly. At this point, the help line has no help to offer and the woman is politely grasping for straws. It seems that giving the impression of politely helping is now more important to the bureaucracy, than is actually helping.
Translation: When my mother was having her meds paid for on time and without a hiccup, that was because Medicaid was committing errors for all of those many years… and now, that my destitute and critically ill mother can not have her prescriptions filled… it is because the system is finally working! Would the top bureaucrats be embarrassed by all this? Of course not! Their workers are polite, follow the script and the citizenry are a bunch of blow-hards!
January 25 continued
In any case, I tell her that I have no way of knowing if the Medicaid Surplus Fax-Line even received the receipts and that I would like to know if they did so that I wouldn’t have to find out two weeks from now that they didn't and then have to start all over again. She very politely hems and haws and puts me on hold for about 8 minutes. She comes back and tells me that I can call a city office called DARB (Dept of Accounts Receivable & Billing) and they can tell me. And so I do… ---->
I call both of the telephone numbers she gave me for DARB and, of course, I get answering machines. The messages on both machines admonish me and tell me that if I have a Medicaid question, I must call the Medicaid Help Line and not them. They that if my question is not Medicaid related, I could leave my number and that they would surely call me back as soon as possible. I cleverly avoid mentioning Medicaid and leave a message on both lines. I know it is a waste of time… just as were my calls a month earlier to the Food Stamp telephone line to resolve issues relating to mom’s food stamps. Days later I have still to hear back from either number at DARB. Quite frankly, I think that the citizenry would appreciate it much more if the telephone messages said something like this: “Hello, you have reached a government office. Thank you for waiting. Please keep in mind that your needs and your time are of no concern to us. Our jobs are secure. An earthquake victim in some remote, unreachable, mountain village in
And so I was sent directly back to the department I started with the previous Tuesday... the department that would not speak to me because of the HIPAA law!!! ---->
January 25 still continued
And so, not wanting to give up, I call the Medicaid Help Line and am put on hold for 15 minutes. Finally a live man comes to the phone to tell me that all of the agents are busy and asks me to please give him my telephone number. They will call me back. I ask him when... but he has no idea: "probably within 24 hours." Yeah, we'll see. I’ll give you one guess as to whether they ever called back or not. Back to the HRA Help/Complaint Line.---->
I call and I get yet another extremely courteous, well-meaning, helpful woman that doesn't know a damn thing and that basically just quotes from some script she's memorized through repetition to scores of desperate patients and their families. Again, I have to explain everything from scratch. Again, she tells me they really can't help me. Again they tell me I need to get the January "payment" in (payment? What payment? We always send in receipts.). Again I remind her tell her that I’ve already done so. Again she tells me that it will be a while before they get to processing it. That I believe, but what I want to know is: “why is this month different than the last 40 months? And so I ask her” "what about my mother? This is the first time this has happened? We did everything write and now she is being penalized. How is it that for the first time ever, since we’ve been doing this, that we can't get the meds at the first of the month, but have to wait until things are processed by the end of the month (or beyond)." She very politely gives me the impression that she thinks I may be mad and/or imagining things. Just as unlikely – she suggests that Medicaid may have, for some reason, been processing mom's claims incorrectly for all of these years and are now finally doing it correctly. At this point, the help line has no help to offer and the woman is politely grasping for straws. It seems that giving the impression of politely helping is now more important to the bureaucracy, than is actually helping. YEAH, I MADE YOU READ THE SAME REDUNDANT CRAP AGAIN! THAT’S TWICE YOU READ IT! HOW DO YOU LIKE IT!!!??? I just did this with the HRA Help line for the fourth time in a few days!
Oh yeh -- it's still January 25
And so I point out that the DARB number was useless and that the Medicaid help line won't talk to me and that I am growing very, very frustrated. She repeats all of the useless advice that all of the other well-meaning, courteous women at the HRA Help/Complaint line have given me. I beg her for something more… anything more… and she puts me on hold. She comes back and gives me another number... I ask a question... and her supervisor chimes in. The supervisor had been monitoring the call without announcing herself (a practice that is clearly not ethical, perhaps against regulations or the law). None-the-less, we discuss my situation and come up with a possible scenario that is the first thing to make any sense:
Perhaps the paperwork we handed in, in December, may not have been registered. In fact, she surmises from what she can see on the computer that this might very well be the case. Well, that would explain this problem wouldn't it? My mother’s well meaning and polite, but hapless home care attendant may have dropped the ball… or the Medicaid office at
And now to the Bellevue Medicaid Office
I call the Bellevue Medicaid office (fearing that they won't talk to me due to HIPAA) and get… answering machine. I leave my number, a brief explanation and hang up knowing this would be another dead end. Again, a “Go Fuck Yourself Citizen” message would have been more appreciated. ---->
And so I write this summary to you as well as to myself to keep from going completely bonkers. So! THIS is Mayor Bloomberg's new & improved city government -- utilizing modern communications/computer technologies with a renewed sense of vigor towards customer service! Well, I must admit, while the actual problem resolution component of the bureaucracy does not appear to be any better today than it was under the Giuliani, Dinkins, Koch, Beame or Lindsey administrations – at least under Bloomberg, the bureaucrats that actually answer their phones are more polite than ever before… so kudos to Mayor Bloomberg! In addition, there are more help lines than ever before for us to talk to well-intentioned, courteous bureaucrats (when they bother to come to the phone). We must be paying them better! Now, instead of talking with one rude and useless bureaucrat and wasting an hour, I can talk to 9 polite (but still useless) bureaucrats and waste four days!
I have no idea what to do next... I can't take the day off to go to
Mom’s been without some meds for a week now… I am going to have to bite the bullet, forgo the Medicaid benefits mom is entitled to and just buy the meds.
Trying to get to the Bellevue Office- Jan 26 2010
So I, Liz have been hearing this saga. I get the epistle describing everything he's been going through and doing.
And now someone HAS to go to the Medicaid Office. I volunteer to go.
Which means I need to meet his wheel-chair bound mother and attendant at 8:30 so we can get to the Medicaid office before it opens, so as not to be there for hours and hours.
I arrive at his mom's apartment. Mom is dressed but not in her coat or in the wheelchair yet. The aide and I try to get her in her coat. Mom digs in her arms. Oh great. She's in a stubborn mood. I pat her and kiss her and murmur at her, trying to get her to cooperate. Finally I mention her son's name. At that she looks at me and finally releases her hold on the table. We get her into the wheelchair and manage to get her coat on.
BTW -- I speak no Spanish. The aide speaks no English. We communicate with gestures and a word here and there.
It's a silent walk over to Bellevue. I'm already anxious because it's almost 8:45. The office opens at 9am and I have to be out of there by 10......
Waiting to be spoken to
We get to the office and it seems as though there are only a few people in front of us. One of them is clearly mentally ill -- he is talking to everyone and to nothing. People are milling about. Some of them are pounding on the door. There are no chairs, no place to wait other than corridor of the hospital hallway.
Finally the door opens and a woman comes out. All of a sudden a bunch of people rush in from somewhere else -- a waiting room? They seem to all know the order of the line.
People are given numbers -- supposedly based on what they need.
I tell them that I'm there because Mom's Medicaid has been cut off. Oops, wrong words, I guess. I'm given a form to fill out to apply for Medicaid. I take it to where the attendant is sitting next to Mom. No, no, no, she says and shakes her head.
I go back to the desk -- I don't think this is right. We're not reapplying. It seems that there's been some mistake either in registering the receipts or elsewhere -- we have Medicaid coverage, but the prescriptions aren't being paid for at the moment.
I'm given a look like -- why didn't you say that in the first place and given a number. Number 10. I look at the clock and try to compute how much time it will take the worker to get through nine people before they get to me.....
Anxiety mounts.
Waiting waiting waiting
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<![endif]--> I sit back down. The mentally ill man is first – he is obviously there often. The lone woman at the desk is telling him to write in his name and address. He sits down. Brings the paper back. He’s filled in everything else besides his name and address. Sweetie, she says, just fill in the name and address. The dance of sitting and standing happens over and over – he finally gets his name and address on the form and turns it in. Next!
A second woman saunters in and leisurely sets herself up at another terminal behind the desk. There’s a large discussion about who has been given what number. The first lady (who seems to call people “sweetie” when they’re annoying her) disappears. Truly – a room full of desperate, anxious people – and one person to process them all.
We’re up to number two and I’ve now been sitting for twenty minutes. Person Number Two now is up and asking his questions. Other people keep coming up and asking for various pieces of information. Person Number Two’s question keeps getting delayed – who knows how long it would actually take if the woman at the desk could actually answer the question all at once.
The woman in the wheelchair
A large woman in a wheelchair comes in. The lady who calls folks sweetie reappears and hands her a form. Hey, the woman says, I can’t see. I can’t fill this out. Sweetie, Medicaid woman says, take it home and get someone to help you and then bring it back.
But I need this to go in today.
Sweetie, I don't have the staff to read for you.
What am I supposed to do, says the woman in the wheelchair.
Sigh. Humph. Let me see if I can find someone to read the form for you, sweetie.
(Oh boy. Two sweeties in two sentences. She's pissed.)
Medicaid woman stumps off.
Nice lady in the wheelchair and I exhchange a look.
Mom gets noticed
Medicaid woman stomps back in.
OK -- I'll do what I can, sweetie, and find someone to read for you. (if i have to is implied
She turns to vanish again and spies Mom asleep in her wheelchair, buried under her coat and hat.
Who is with this woman in the wheelchair, she asks.
I am.
Why didn't you say that in the first place? You'll go next. You shouldn't keep this woman waiting here. (as if I wanted to spend my time sitting and waiting)
The crazy loop
I finally go up to the window to speak to the clerk. I ignore the stares of hatred behind me.
I present my case:
For the past seven years, we've always turned in our receipts and then been covered for Medicaid expenses. This past month we went to pick up Mom's meds only to be told they weren't covered this month. What changed? Why is anything different? We didn't do anything differently.
The woman looks at my records.
Well, she says, you didn't turn in receipts to cover the month's spend-down. Therefore, you're not covered in January. The last time you turned receipts in was December.
Let me get this straight, sez I. You're saying that the receipts turned in in December only covered December's Medicaid?
Yes - that's what it's for, she replies. You have a surplus income -- therefore receipts have to be presented to show that you have expenses enough for Medicaid to kick in.
(Now....this makes sense in theory. You spend the surplus until you're Medicaid eligible. Then Medicaid covers the rest. However - my friend has NEVER done this. In fact, he has turned receipts in on a quarterly basis and then been covered for the following quarter. Did Medicaid just notice this? Is this a new policy? And meanwhile, what is a woman who received a pittance from SSI supposed to do? How, in fact, does this surplus make any sense?)
I ask the woman all these questions. She shrugs. She doesn't know, it's not her problem.
I then give her the current receipts from the clinic at Bellevue in order to get at least the next month started. She hands them back to me -- they don't have a "date of service" on them. WHAT! They're from Bellevue, I say. We happen to be standing in Bellevue - is there something that can be done. No. They're Medicaid, nothing to do with Bellevue. She suggests I contact the Bellevue billing office and tell them they need to reissue the bill.
Wow. Wow. Wow. I say. I know this seems like it's a short interchange, but it was a full 35 minutes of going back and forth for me to understand about the spendown having to be in the current month and her saying that we could never have done what we've been doing for the last seven years. I wonder what it was we were doing, if not what I said we were doing.
Wow, I say again. She asks if I want to talk to a supervisor. Yes! Please!
The woman who calls everyone sweetie comes out. Oh no!
We go through the whole loop once again.
I'm getting it -- we're supposed to turn in receipts early in the month so the rest of the month is covered. But, I ask, how do we do that when the items that need to be bought are bought throughout the month. Or the appointments are later in the month? How is that supposed to work?
Sweetie -- i don't know. (sigh) Schedule your doctor's appointments for the beginning of the month, I guess. Figure it out.
And, I ask, how is a very poor woman supposed to find the money to cover the expenses of the medications she needs but in past relied on Medicaid to cover?
Sweetie, do what other people do. Borrow the money from family. Use your credit card. It's not Medicaid's problem how you find the money.
Wow. Wow.
Unbelievable.
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