I would like to say that last week was the week from hell. But it could have been worse. Mentally, I almost lost it, but all through the week, I had to keep my cool so as to keep my health and immunity, and not raise my blood pressure. And of course, since I have auto-immune conditions -- the worst of which are my allergies -- my mental condition had to stay within control. What happened was so out of my control that I had to give up any attempt to take control, and that meant I had to accept that the people involved are stupid, inept, non-caring, and nothing more than government drudges who are programmed like robots, to do and say certain things, regardless of the fact that they hold the fate of a human being in their hands. As you read this, understand that I am a comparatively young, and very educated and intelligent person of pretty sound mind. Also keep in mind that if this happened to me, it has to be happening to millions of other people, most of whom are older than I, and be not with as sharp a mind as I have. Most of all, I could be your parent, grandparent, friend, any family member or loved one. I don't think anyone really appreciates the fatigue that goes along with a neuromuscular disease.
I have Medicare, since I had to leave my job in late 2004, and collect Social Security Disability. Anticipating that I would need round-the-clock care, Eileen, the social worker at the ALS clinic at the time, referred me to an eldercare attorney, and I got into a pooled-income trust. In order to get all that home care, you have to get on Medicaid. The pooled-income trust takes everything except the under-$800 I am allowed to keep. The trust pays my monthly bills. with the money I send them, which is everything else. Without the trust, I would have to go down to the Medicaid office every month and present my bills to have my Medicaid "turned on" and make sure there were no gaps, or I would have Medicaid "turned off" and would have to have it "turned on" again. Instead -- in my case -- I just have to stay in the trust by re-certifying every year.
Recertification: Every year, I receive the appropriate form in the mail about 4-6 weeks before the due date. This gives me time to gather about 50 documents that have to be attached, and which give me certain information that goes on the form. Then, for my own protection, I never let anything leave this house without making copies. My multi-function printer/scanner/copier is not all that fast, so it's a tedious process. It's also a fatiguing activity for me, especially since this damn new wheelchair has obnoxious footrests that don't fold up like my old ones, and it's tiring to keep reaching for files, because I can't park the wheelchair close enough to the file cabinet. It's hard for anyone to help me, because it's a lot faster for me to find the files and not have to talk to someone to give directions.
On Sunday, April 15, I pulled my wheelchair up to my desk, and it gave a jump and and landed the right arm containing the joy stick, under the desk, and the control bent totally upward so I couldn't move the wheelchair. Sunday is TV night for me -- my three favorites all in a row 8PM "The Amazing Race", 9PM "The Good Wife" and 10PM "Mad Men". Well, the Race was about to start, and I couldn't move, and my back was to the TV. G, my aide is not good in a crisis. I was trying to tell her to put the wheels in manual and pull me back. She never got me the iPad or writing board and the frustration was mounting and my voice went up two octaves. G. said she couldn't deal with "this strange voice" and panicked even more. I finally convinced her to get the doorman, who if you compare him to the sharpness of the knives in the drawer, he's the butter knife. It was like a scene from "Confused and Dumber". Finally, we called 9-1-1 and two cops came and shifted the wheels while lifting the desk a bit, and I was free. Except that my joystick was forever bent because it was in that position for a full hour. My "Amazing Race" was over, and "The Good Wife" was about to start, but the stress was there; you could cut it with a knife. Not only was I stressed out that there had to be such drama, but now I knew there would be challenges driving the wheelchair until it was repaired. The process of getting the repair approved through Medicare is a long and involved one. If the wheelchair had been pulled back immediately after this happened, rather than almost an hour later, the damage wouldn't have been as serious. But I didn't feel like arguing about fault, or about how "unsafe" it is, and certainly not about how the aide had to get the doorman as a "witness" so I wouldn't get her in trouble or say that my voice change to a higher pitch was because she was abusing me. The woman has been with me for five years, and I asked her one question: "So in a crisis, you are more concerned with how it looks for you, than helping me?" I knew the answer. I just wanted to watch "The Good Wife" and "Mad Men"
Back in February I called my case worker JP because I knew my recertification was coming up again, and I told him I would download the M11q doctor's form and bring it to my clinic appointment. He told me that the form was due like right now. So of course I told him I would get an appointment at the ALS clinic as soon as possible and have the form signed. He warned me that I'd better get it in soon, or my Medicaid will be cut off. I went to clinic on March 2, and the next day sent my aide to UPS to fax it. But first we have to call JP, because even if I put the fax to his attention, it goes right to the Central Office and nobody gives it to him. So he has to be at the fax when the fax comes in, or someone else will snatch it. I'm not making this up. So when my aide calls him, he says "Why are you sending this to me? I'm not showing in my computer that it's due." My aide reminds him that he threatened me with cutting off my Medicaid. He says "I did?" I call him and ask him about the recertification. He says "Wait until you receive it and fill it out and send it in".
So the day after the wheelchair mishap, which is Monday, April 16, I get a call from JP. He yells at me "Where is your recert? You never sent it in? The Central Office is cutting off your Medicaid!! Why didn't you send me a copy?" I reminded him that he told me to fill it out when I received it, and I never received it. He yelled "According to them, they sent it to you, and you never returned it!"
"I don't care what they say", I told him. "I never got anything"
JP said "well, they don't care what you say. They say they sent it. I am coming to your house tomorrow. Have it ready for me to pick up!"
I told him that, even if I had the form, there was no way I would be able to do it that fast. He said he was out in the field but would fax it to me the next day- Tuesday, which he did, and said he would be at my apartment on Thursday to pick it up at 10:00am and I should have it ready. Maybe if I could give it to him then, we could avoid the interruption of my Medicaid.
The next two days, I let my emails and everything else pile up. I cancelled two appointments. I had already gotten most of the documents together on Monday, because I had done this form 5-6 years in a row. Unfortunately, my files are not as neat as I would like them to be, but I managed to clean out some files while I was digging for the documents I needed. Now I had to put everything in order and make copies, with the aides' help loading paper in the printer and stapling things together. By Wednesday early evening, it was all together. When JP came the next day, I would be able to hand it to him in perfect order and maybe he could expedite the process.
So JP walks in on Thursday morning and sits in the chair. He says "Feel free to ask me any questions". I said "I have no questions". I try to hand him the big brown envelope with everything he needs, and came to pick up from me. He doesn't touch it. Instead he says "I'm in the field today. Tomorrow I will not be going into the office because I have a training. I will have to hold this until Monday. If you trust me, I will take it. But I am not responsible if it gets lost or gets into the wrong hands."
WHAT????!! Is this really happening? He tells me "If I were you, I would take it into my office and give it to my supervisor LR" His office is clear on the other end of Queens in Long Island City. He turns to my aide and says "Why don't you take it in today". He offers her driving directions, but she doesn't drive. And I want to go with her. I can't go on the subway because it's not accessible. JP doesn't tell us the Queens Boulevard Bus [Q60] goes right there [the buses are accessible], so I tell him I will book Access-a-Ride for the next day. He calls LR and verifies she will be there in the morning and I tell JP I will be there in his office tomorrow.
He tells me he is retiring in July and says "By the way, your Medicaid will definitely be cut off on May 1, but not your home care. But you should get it back in 4-6 weeks. I use Medicaid for my psychologist, and for dental and optical. I was planning to get new eyeglasses for the first time in three years, and go to the dentist for the first time in two years. I guess both of those will need to wait a little longer. "You and I won't be seeing each other again, so good luck to you", JP says as he walks out the door. Yeah, Mr. P, good luck to you too, and thanks for this mess-up as your swan song. But why should you care?
So the next morning we go to the CASA/Medicaid office and we are met by LR and she calls JP out of his cubicle. I don't miss a beat. I look at him as he escorts us into a conference room, and I set up my iPad so I can speak. I remind him he told me he wasn't coming to the office today. He says "I have a training later", and then he adds "I didn't know you were coming here so early while I was still here" And he gives a nervous giggle......BUSTED.....
"But Mr. P, you told me you weren't coming here until Monday. Why couldn't you bring in my papers?"
" I told you I wouldn't be responsible and you CHOSE to come in here"
"But that was because you said you weren't coming here until Monday"
Again, he repeated, "I thought you would arrive here after I went to my training", and he ran out of the room. So, in other words, you didn't know you would be busted.
LR comes into the conference room, opens up my envelope, sees that I have everything, including a set of papers I didn't need to submit past the first year of the trust. She looks at me and says "I don't understand why Mr. P couldn't just bring this in. Why did he make you come in?" She leaves to make copies of everything. JP comes back in the room with her and she hands me the copies. JP says "You see, Ms. Cohen. It's always a good idea to come in person" Excuse me? Did you ever tell me that was even an option all these years when I paid $20.00 at UPS to send this, rather than $4.50 for Access-a-Ride and the luxury of someone making the copies for me with the city's paper and ink?
Fast Forward to today. I received official notice that my Medicaid is discontinued as of May 1, including my home care. BUT I can appeal by requesting a hearing, and then I will continue to receive my service until a decision is made. So I requested a hearing online, and I will have to go to Brooklyn at the date they give me, even though my papers have been submitted. And this is all through no fault of my own. JP is retiring, so he cares even less than he always has. I'm thinking of writing to my city councilwoman or my state senator and/or assemblywoman, but let's see how much energy I have. First I want everyone to read it here, and know this is not just me. Things like this are probably happening every day. All government agencies have people who are biding their time until retirement. And if they can do this to a smart and level-headed person like me, think about what they are probably doing to elderly patients or families with children. You're right, JP ---- when you said "I am not responsible", you really meant it.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Tuesday, April 24, 2012
My Own Reality Show: How NYC Bureaucracy and Health Care Messes People Up
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This is a disgrace; it's one of the reasons I struggle to live independently. I'm going to message you on Facebook.
My Lord, what bullshit they put you through. All so unnecessary. I deal with the recertification process regularly because I get food stamps and some help with my medical (in addition to Medicare), but no Medicaid, and no home health aide which I could use. Recently, without letting me know, they stopped paying my co-pays so I've been getting bills from a few Drs. Apparently I earn $10 too much now that the yearly COLA kicked in.
I call DSHS and they send me a form to be sent back ASAP. That was last week. I haven't heard anything since. I think it was supposed to get me into a "spend down" program of some sort. Heck, if they don't tell me what programs they have that will benefit me, how can I apply for them?
Wish me luck, and I will hope for the best for you as well. Being poor sucks worse than being disabled, I think.
Websterto, I wish you luck!
I must take issue with your comment that it's worse to be poor than disabled. It's rather moot to compare the two because the way this country's health care system is structured, people with disabilities almost always end up poor no matter how much money they start out with. I was finally a tenured teacher when I was diagnosed, and had worked hard to reach a decent salary. It didn't matter anymore because I had to spend it all and then go on disability......so now I am poor AND disabled.......however, if you have your health, you can work. So it's never a choice between poor and disabled.
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