Medicaid Services: Too Little, Too Late

We spent two or three months trying to get a care manager from Health Homes, “we” being me and Dr. Katherine (Kate) Lewis, a psychologist with Psychological Health Care. He—Leonardo Sanchez—finally showed up at Sunnyside Care Center last Thursday morning. A case manager at last!

He left my room to find out how I was supposed to get the walker with which I was to be discharged, and swearing that he would call me back that afternoon. We both understood that his office was closed on Friday for Independence Day and that he would talk to Kate and then meet with Kate and me at my apartment on Monday. Leo did not call me back.

On Friday I was discharged with no food and a prescription for a walker that I had no way to fill. My pain level was down to two Tylenol a day. I wheeled to a Chinese place and got Egg Foo Yung.

On Saturday, at home, I discovered on MyChart that somebody had made an appointment with Dr. Nanavati for me without telling me. It was for 8:00 a.m. Monday. Morning is my absolutely worst time. My aide, Robin-the-magnificent, doesn’t get to work until 8:00 a.m. I was terribly sick and absolutely had to see the doctor. Impossible. Impossible. Robin and I went to the university shopping area and got juice.

I had lost eight pounds in a week. I was weak and wobbly and frequently lost my balance. I slept or not, ate what I could carry without a walker or tray. Moved from bed to recliner and back, terrified with each step, hit my head and wept. I stank from sweat, a catheter and no perianal care, thrush and no dental care. On Sunday, Robin and I got me some kind of shower, at high risk for falling.

On Monday, Robin got up around 5:00 a.m. and took the bus to my place. Arrived around 7:00 a.m. Fed me breakfast and got me dressed. I was at Dr. Nanavati’s by 8:00 a.m., sobbing in pain from a muscle twitching in my big toe. The receptionist asked if I was all right. I said I was in pain. She said “oh” and left me sitting in the waiting room.

My vital signs were all normal. Dr. Nanavati hugged me and I wept. He adjusted the wheelchair so I could lay back. He said that first we had to deal with the pain, which—consequent to having to take care of myself—was now up to two narcotics every four hours. He talked about an orthopedist, increased services, talking to Dr. Ghaly, looking—not in medical services but in the community—for help. Kate and Leo were meeting with me at noon, and he wanted to talk to them.

I went home. Robin put me back to bed. I took two more painkillers, and slept.

Kate arrived. Meals on Wheels had been left outside the door. Leo did not show up. We spent half an hour trying to find him. He had said he would be here at 12:15 p.m. He wasn’t. Then he said he wasn’t my case manager; he was an intake worker. Then he said he would come on Friday to meet with Kate.

Kate knew I couldn’t possibly last that long. She said she would call Dr. Nanavati, and I knew she would do it. Whether, together, they can save me I do not know.

I can’t even turn over in bed. My catheter bag is full and I cannot empty it.

I have done everything I was told to do. I have complied with the system.

It will be the death of me. This is what your taxes pay for: too little, too late. You pay for a boondoggle that does not provide essential services. When are you going to stop paying for Medicaid when it doesn’t work?

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Complaint against Sunnyside Care Center

1. I cannot turn over in bed. At SCC I could power my bed down flat, grab the side-rails above my head, and pull myself up. At home, my hospital bed has no side-rails and I am too weak to turn over without assistance. As I repeatedly told SCC, I have no assistance except a home health aide and I am alone 21 hours a day. I have no family.
2. I was admitted to SCC on Thursday 6/25. I lost eight pounds in nine days at SCC.
3. When Natasha, a tall, African-American nursing supervisor, was discharging me on Friday (7/3), I asked her how I was supposed to eat. I subscribe to Meals on Wheels Monday through Friday. I would go Friday, Saturday and Sunday without food. Natasha said my aide would cook for me. She doesn’t know how to cook, and I had been in the hospital and at SCC for two weeks. My landlady had cleaned out the refrigerator, and I hadn’t been able to go grocery shopping for two or three weeks prior to that. SCC did not know or care that I would be three days without food on 4th of July weekend.
4. I was discharged home with ten prescriptions and no way to fill them:
a. A walker, a commode
b. Four scrips for insulin and needles
c. A scrip for treatment of thrush
d. A scrip for a pain killer
e. Benadryl
f. ?
5. The nurse practitioner had interrupted my physical therapy session to tell me that she’d written the prescriptions for my discharge. (A) I did not want to be discharged home; (b) my apartment was too small for a walker and a commode; (c) I had stopped taking the insulin; (d) I had never taken Benadryl. The nurse practitioner had never met me or talked to me.
6. After the admitting interview, Dr. Morrow, the only physician on staff, never spoke to me. I reacted to the insulin, and asked to speak to her. She didn’t come. The next day, an aide said, “Oh, you want to get on the book?” Yes, whatever. Dr. Morrow did not come that day either. The next day, nursing supervisor Natasha announced that Dr. Morrow had seen me the previous day. She hadn’t. That day the nursing practitioner stuck her face in mine and said she’d written the discharge prescriptions. I still was not saying yes to being discharged. On the last Thursday, Dr. Morrow came in and said she couldn’t talk to me; she had to go to a funeral. She went.
7. I asked Natasha how I was supposed to get the prescriptions filled. She said, “Your usual way.” I had no usual way. Prior to Sunnyside, I did not take drugs or use a walker or commode. I have been using a power wheelchair for about ten years; my aide does not have a car. SCC discharged me with ten prescriptions and no way to fill them.
8. When I got angry, Natasha grabbed the prescriptions and the discharge papers and left the room with my aide Ty in tow.
9. Ty, a very tall, 23-year-old African-American aide, is incompetent.
a. He took my vital signs. I asked him what my blood pressure was and he said 90. I asked what the other number was. He said 90. We went around and around on this until I turned the wrist cuff and showed him that “sys” was 160 and “dia” was 90. Ty did not know how to read a blood pressure.
b. He came into my room, turned the water on full blast to get it warm, and left the room. After 20 minutes another aide came in and turned off the water.
c. Every time Ty said he would be “back in a minute” then he would not return for half an hour.
10. Another aide also could not take my blood pressure. She came into the room with some kind of unit to check my vital signs. I asked her where the blood pressure cuff was and she said she didn’t know—she had never before checked vital signs. She left the room and did not return.
11. SCC used wrist cuffs to check blood pressure, not a manual cuff or a machine. It is my understanding that the wrist cuff is the most unreliable—and cheapest. To check temperature, they use some kind of thing that they hold against your temple.
12. Supplies always were in short supply. One day an aide dropped a washcloth on the floor. She put it in the dirty linen bag, left to get another one, and came back with a towel instead. There were no more washcloths.
13. Instead of using the standard pink pitchers, SCC uses 10 oz. hard plastic glasses with black lids that have a hole for a straw. A nurse took my glass for a refill. She did not come back with it. Later an aide went to get me another glass and came back to report that there were no more.
14. Antoinette is an evening med nurse who has been at SCC for 30 years.
a. She was the one who took away my glass and did not return it. (I have a rare kidney disease and put out four times as much urine as normal, necessitating four times the normal input.) When I saw her later, I asked her about it. She immediately went out to where she’d left the glass and brought it back.

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After five days on Upstate/Community General Observation Unit and eight days at Sunnyside Care Center rehab, what are my conclusions?

Not much.

1. I am tired, too tired to know or care.
2. Care of the sick is given over to the least intelligent people.
3. The least intelligent people are the most rigid, inflexible people who gather in cliques of malice.
4. The poorest patients are given the worst treatment.
a. The doctor stopped by literally for a minute today because she was going to a funeral.
b. The nurse practitioner came in yesterday to tell me that she’d written prescriptions for my discharge without asking how I felt about being discharged, then left without talking to me: five minutes.
c. The nursing supervisor came in yesterday and told me that the doctor had seen me the day before: she had not.
d. The med nurse, the day before, had “put my name in the book,” requesting to see the doctor.
e. I once knew a physician who said that if I was sick enough to be in the hospital then I was sick enough to be seen every day.
5. Tomorrow I will be going home at 10:30 a.m., where my aide will meet me for three hours. Thereafter, I will be alone for 21 hours. I have no idea how I will get lunch or supper.
6. There are hundreds of thousands of people like me: women, living alone, unable to fend for themselves, and too depressed to care.
7. A neighbor called me last week to tell me that another one of our neighbors “exploded.” She died with nobody knowing or caring, and at some point—about three days into the decomposition process—she “exploded.” That’s the third person this year in our apartment building.
8. The Lord has called us to take care of each other. We’re not doing it.

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Sunnyside Care Center–Not

6/27 Today is Saturday. I am in the Rehabilitation Unit of SunnySide Care Center but neither the room nor the phone number is posted in the room where I can see it. I am across from Room 16. At 7:00 a.m. I push the call bell. In ten minutes a staffer arrives wearing no ID.

I ask her to open the blinds; neither my roommate nor I had asked to have them closed. It is facility policy, out here in the boondocks where only the birds and the bunnies can see in, and I doubt that they care. The air conditioning is on and most certainly is below government standards. I ask for another blanket, more water, to have my dentures rinsed and to have maintenance called—again—about the cold.

The Unknown Woman who answers the call bell takes five minutes to open the blinds, cover me with another blanket, bring me water and ask if the denture pan on the sink is mine. How should I know? There are two of us in here, both bedridden, and staffers do or don’t do as they see fit. The Unknown Woman chooses not to use it, but wants to know why there is yellow liquid in the denture cup.

Because the doctor ordered it for thrush, which I got in the five days I spent in Upstate/Community General Hospital’s Observation Unit, where I was transferred from the Emergency Room. The Observation Unit had no denture tabs in the type of Efferdent, and did nothing to assist me in getting my dentures out at night, hence, a thrush infection.

A few minutes after Unknown Woman 1 leaves, Unknown Woman 2 comes in bearing a piece of paper with my name printed on it in 2-inch letters and asked if she can hang it on the wall over the bed. Sure, I say. They were required to name me two days ago when I arrived, but oh well . . .

6/28 It is 6:30 a.m. Sunday, and terribly cold. I press the call bell and the night nurse comes in. I tell him I need to go to the bathroom, which starts with moving the two big yellow plastic “caution wet floor” placards that are posted between my bed and my walker. The nurse says what’s up with this? I debate how much to tell him, and blow it off with “There was urine spilled on the floor,” by an incompetent nurse.

The night nurse then notices that the catheter bag is quite full. I put out three or four times as much as a normal person but nobody has checked the bag all night. Urinals are kept in the bottom drawer of the night stand but when the night nurse checks, the drawer is empty. He hustles around the room looking for a urinal while I try to remember.

The night before the charge nurse, with thirty years’ experience, tried to empty the cath bag and bungled the job terribly. For starters, she opened the clip on the tubing while holding it about eight inches away from the urinal. Urine spouted all over the floor. Then, when she jammed the thingy back into the thingy, she did it in such a way that it couldn’t be re-opened. I’ve had this catheter for four years and no one else has jammed it up this way.

It appears that the bag will have to be changed. The nurse says she doesn’t want to do anything invasive. I reply that I’m not talking about changing the catheter, which is the tubing that goes into the bladder and which I would never let her touch because she is clearly incompetent. I’m only talking about changing the bag, which is attached to the tubing outside the body. The nurse says that hospital bags are different from the bags Sunnyside uses. And so the argument goes. It is 9:30 p.m. and I am tired and need to sleep, so we agree on calling the nursing supervising.

And I don’t want to re-hash the bad night anymore, but after spilling more urine, arguing with me et cetera et cetera was the supervisor putting the urinal back in the drawer without the lid, which was lying under the dresser. When I pointed that out to her, she decided to get a new urinal. She left the room and did not return.

7/1 Tuesday night. Full urinal is sitting on sink next to my dental supplies. After I ate supper then I took a nap. Woke at 7:00 p.m. with the urgent need to have a bowel movement. Pressed the call bell. Sat up, put on shoes and discovered the hook on the catheter bag had been jammed into the edge of the bed and I couldn’t get it out. The call bell was on for 25 minutes. When the aide finally arrived, she got angry at me because there are 40 beds and four aides—two are on duty and two are on break.

I keep telling her that a bowel movement is a natural bodily function, and asking her what I should have done.

She keeps telling me not to abuse her.

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Learning About Pain

Well, here we are almost halfway through the summer and I am learning enormous new things about pain. The thing about systemic exertion intolerance disease, uncontrolled diabetes mellitus, nephrogenic diabetes insipidus, and unstable severe obstructive sleep apnea—all of which I have—is that, while they are all an almighty pain in the neck and seriously compromise my quality of life, none actually hurt. Imagine if only one—or even all four—caused pain. That would be awful, wouldn’t it? I often have thanked God for withholding chronic pain from my scenario.

Well, maybe God got fed up with me because, about three weeks ago, he visited some middle-of-the-night pain on me. Discomfort in my hips and/or legs. I ignored it. Did I, in fact, have the audacity to ignore a message from God? I don’t know, but it got worse so I consulted with my chiropractor.

The pain was now clearly located in my right hip and the chiropractor and I agreed that it was probably a touch of arthritis, so I took some aspirin and he loaned me his LED lights for three nights. Neither did much to relieve the pain, particularly during the night, so on Thursday I got acupuncture, a lumbar x-ray, and blood work. That relieved the pain for one night, which is often what acupuncture does.

Friday night I again woke in pain—really, really bad pain. Nobody would go with me to the Emergency Room (ER) and I couldn’t get the ambulance company I wanted, but what are you going to do? Pain hurts. I hung in there for a couple of hours but I couldn’t stand it, so off I went to the ER where x-rays of my hip showed that I had both arthritis and sciatica. For those of you who never have met sciatica, here’s what the Mayo Clinic has to say about it:

“Pain that radiates from your lower (lumbar) spine to your buttock and down the back of your leg is the hallmark of sciatica. You may feel the discomfort almost anywhere along the nerve pathway, but it’s especially likely to follow a path from your low back to your buttock and the back of your thigh and calf.
“The pain can vary widely, from a mild ache to a sharp, burning sensation or excruciating discomfort. Sometimes it may feel like a jolt or electric shock. It may be worse when you cough or sneeze, and prolonged sitting can aggravate symptoms. Usually only one side of your body is affected.
“Some people also experience numbness, tingling or muscle weakness in the affected leg or foot. You may have pain in one part of your leg and numbness in another.”

So, in the ER, despite my history of being allergic to all medications, I got an injection of something like Ibuprofen and slept for about an hour without my auto BiPAP, which surprised me because I didn’t think I could sleep without it. When I woke up, my first thought was “Hey, maybe I can tolerate medications now.”

For a year I’ve been treating with homeopaths who prescribed a remedy, but still maintained that my immune system was so messed up (mostly from taking antidepressants for 26 years) that I could not tolerate any drugs, yet here I was not only taking a medication but benefitting from it. So what’s up with that? There is no book on how to treat systemic exertion intolerance disease (SEID) and there is no literature on what damage is or is not done to the system after taking antidepressants for 26 years. Actually, there is literature on the acute withdrawal phase from antidepressants but there is no data or research on what the residual damage is after you’ve been off antidepressants for 14 years.

So what if my immune system has recovered enough that I can take meds? I decide to try it and go home with a prescription for ibuprofen, 600 mg. every six hours. The next day I feel kinda sorta better, maybe a little bit.

I take my last daily dose of ibuprofen at 11:30 Sunday night and go to sleep. And two hours later I wake up in the aforementioned really, really bad pain. How can the Mayo Clinic call it “excruciating discomfort,” which means “intensely painful lack of physical comfort?” Isn’t that like having really hot ice cream . . . ?

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Onondaga Case Management, Again

So I ate lunch—homemade bean soup, cornbread crackers, a banana ice pop and iced tea—and then had a medical massage, which always is a really, really good thing, and a gift from a Christian. Lots of people like to say lots of really, really bad things about Christians, particularly how they start wars and kill a lot of people, but I know some Christians who are really, really loving and do kind things like give me free massages, so I get massages with love.

So I promised myself that I was going to spend the rest of the afternoon reading and sleeping because I’ve been pushing myself pretty hard, and have a couple of strenuous days coming up and I need to be prepared. I read for fifteen minutes, as is my wont. Once I tried to go to sleep without reading for fifteen minutes and instead of sleeping I got awaker and awaker and finally had to get up and start my whole sleep routine all over again. Let that be a lesson to you. I’ve never since gone to sleep without reading first.

Currently I’m reading Sara Paretsky’s Blacklist, featuring V.I. Warshawski, private investigator. V.I. has fallen into a nasty, dirty pond, discovered a dead man, and caught a terrible cold. I am 99 pages into the book and still haven’t decided if it is worth reading, but that’s irrelevant to this story.

I read, I went to sleep, and fifteen minutes later the phone rang. Don’t you just love it? I need to get someone to teach me how to turn the damn thing off because no phone call is ever as good as the nap it interrupts. The caller was some intake female from Onondaga Case Management.

I do not like Onondaga Case Management. I had a case manager from them several years ago. She started out great but then went off the rails. She was telling me about her 40 first dates from a dating service—39 of whom wanted to have sex with her—and her son’s trip through the ICU, and her separated husband’s suicide attempt. Also, when we went for coffee, I had to pay for hers, and her car always seemed to break down on the day of my appointment, and so on and so forth. If the client is so messed up that she needs a case manager, then she also needs not to be burdened with somebody else’s life crises. It’s called professionalism.

So I called her supervisor to beg for relief. Of course, the supervisor did not take the call. She let it go to voice mail and did not return it: she went and talked to the case manager, who said everything was fine. So I waited a couple of days and called another supervisor, who also let it go to voice mail, then talked to the case manager, who said everything was fine.

Holy crap! What are you supposed to do when your case manager has gone off the rails? I put all the problems in a letter to the agency director. Thereafter, the case manager was removed from my case. And I was not given a new case manager. They decided I didn’t need one. WTF?!

I was treated most unfairly, but the one point that I did hammer home was that somebody’s got to check up on the case managers! You can’t just let them have their way and take their word for it that everything is fine! In human services you can’t just abandon quality control! Some guy’s working the manufacturing line and putting the widgets on backwards and nobody notices? That’s what they do in human services.

What they should be doing is having the supervisor meet regularly—maybe once every six months—with the client and say “How’s it going? What do you and your case manager do together?” Since the debacle that I made them aware of, I’ve heard that Onondaga Case Management (OCM) is now doing something like that—but not with me. Me they kicked out.

Let me tell you another story of something I got fixed at OCM, nearly at the cost of my life. I applied for services there and they refused me, saying I didn’t need services. Well, it turned out that there’s a specific list of things you should have, and if you don’t have them then you should get a case manager who will help you get them—stuff like a safe, affordable home, Food Stamps, Medicaid, and so on.

Well, “they” decided I didn’t need help. But I was falling apart. Things got worse and worse, and I kept applying to OCM for help and they kept refusing me. Even when I ended up in the hospital and the social worker applied for me, I still got turned down. I was desperately in need and no longer could cope with anything, but The System, in its august wonderfulness, would not help me.

Wrought with despair, I took an overdose of drugs and spent a month in the ICU on life-support. After which, my doctor said “You do not go home without a case manager.” Then he called the head of the agency and I got a case manager. I was pretty pissed off; you shouldn’t have to die to get help, but that is the way it works in the psychiatric system in Onondaga County.

What I found out later was that OCM had one—and only one—girl doing intake. She never re-evaluated my case. She decided “no” once, and never again looked to see if my circumstances had changed.

I don’t know what OCM did with Sharon Frisbee, the intake woman, but the intake process was turned over to a committee, thereby increasing the possibility that someone will actually pay attention to the people petitioning for help.

And now years have gone by and I need help again and some bleeping dorkhead in Rochester has referred me to Onondaga Case Management when I requested a different agency.

How many lessons, and at what price, do I have to teach OCM?

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HUD Inspector General’s Office

Dear HUD Inspector General:

My name is Anne C Woodlen and I live at McCarthy Manor, 501 S. Crouse Ave., Syracuse, N.Y. 13210. My email is I am 68 years old and multiply disabled. McCarthy Manor is owned by Related Companies ( ) and is a HUD-subsidized property for people over 65 or disabled.

We have 183 tenants in an eight-story building and we only have one elevator. The second elevator broke down on February 2 and has not been repaired. About fifty of the tenants are in wheelchairs and about another 25 use walkers. You only can get two wheelchairs in the elevator at a time.

The reason the second elevator has not been repaired is because the owner, Related, and the elevator company, Schindler, can’t agree on who’s going to pay for it.

Related bought the property around 2007, got a $1.5 million grant, and rehabbed the place, including the elevators. February 2, 2015, there was a major breakdown that took one elevator out of service. Now Schindler says Related has to pay and Related says Schindler has to pay and they will not fix the elevator for the tenants.

Meanwhile, 183 people, 50 in wheelchairs, 25 with walkers, and a couple of dozen with dogs all have to squeeze in one elevator. There are times when the line waiting for the elevator goes across the lobby, out the door, and down the sidewalk. Everybody is fighting with everybody else. The dogs are biting each other. Tenants are taking each other to court. The landlords are ordering us into mediation. The problem is that we are not being served as we are supposed to be.

I, personally, have talked to the manager, Dana Natale. She pre-dates the Related Company and was a wonderful manager but now Related has tied her hands and ordered her not to talk.

I have talked to Jessica Chiamulera, District Manager, (Related Management, Telephone: (315) 475-5027, Fax: (315) 475-2928,, who issues public relations statements instead of dealing with the problems, and gets about half the facts wrong.

I have talked to Betty Perry, CPM®, Regional Manager – (Region 4) (RELATED MANAGEMENT, Office: (631) 284-3417, Mobile: (646) 522-4217, FAX: (631) 727-4412). She refuses to take any responsibility, repeating over and over that she’s only had the property for a year, and she gets the other half the facts wrong. Both people are stone-walling the tenants with lies and half-truths.

Hector Panero is the senior vice president at Related who is responsible for the property. I call or email, and he kicks it back to Perry, who continues to do nothing.

I have contacted Tom Druelinger, our project manager at HUD. He does nothing except forward complaints to CGI, whose call-takers in New York City will not listen to old, confused tenants, and then get the facts wrong. I am too old and sick to keep up with those damn kids, and when I asked for more time under the ADA, they gave me one week and then closed my case.

We had a fire here about a month ago (the second bad fire in about 15 months). I woke up to smoke billowing up past my window. I live on the eighth floor. People in wheelchairs in a fire? That’s a two-man carry down the stairs for each tenant and that’s impossible for the Fire Department.

The fire chief and I agreed that if they have to evacuate the tenants then it will be in body bags. The chief has called the situation “intolerable” but says there’s nothing he can do about it: the code only calls for one elevator.

The tenants here are at each other’s throats because we simply cannot live our lives safely and in a healthy manor with only one elevator. Our home health aides need about fifteen minutes for each one-way trip in the elevator to get the laundry washed and dried.

For God’s sake, will you please help us? Related Management does not care a fig about the tenants; they only care about the money. WILL YOU PLEASE MAKE RELATED MANAGEMENT SERVE US ADEQUATELY, EVEN THOUGH WE ARE POOR?


Anne C Woodlen

P.S. There are multiple other serious problems that have arisen since Related bought McCarthy Manor, but I am too sick to detail them now.

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