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My day started with a greeting card pushed under my door by a friend. The card said—
No matter how crazy my life gets,
I know you’ll be there.
And when it’s your turn to lose it,
You can count on me.
We’re so screwed if it happens at the same time.
Well, this is just about the best card I’ve ever received and I want to go out and buy a whole box of them, but my new aide is coming.
Two days ago, All Metro Health Care’s manager came to my home with a middle-aged female aide. We did all the interviewing stuff, including reviewing the Care Plan and the aide’s schedule. All of this went fine and didn’t raise my blood pressure, so the manager left and the aide and I went to work.
First, we put a load of laundry in the washing machine, while she tells me that she knows all about my apartment building—she knows it really well. How’s that, I ask? She replies that she’s had another client here four hours a week for the past year. Hm-m-m, I wonder to myself: an eight-story building with 176 apartments—is it possible for her to have learned everything in 208 hours?
But I don’t say anything because earlier in the day I had spent some quality time with one of my health care providers. She was on a major roll—left-brain science, right-brain intuition, Christian theology, guided meditation—and she really had helped me move to a good place, so I was looking at the aide as if she were my daughter whom I really loved, and who I really wanted to have a good experience, and I really wanted to help her learn the best ways to take care of me.
So I just let the “I know everything” attitude go by without comment. Then we hang up all the clothes on the chair—doesn’t everybody have a bedroom chair that accumulates clothes?—and she puts clean sheets on the bed, which have needed them for a couple weeks. And she tells me how everybody in this building (of 176 old, poor, sick people) is so nice and so friendly and so funny (funny?) especially the little old gray-haired woman named X.
Well, everybody who’s lived here more than 12 weeks knows that X is a royal pain in the butt. She’s also an officer in the Tenants Association and has a lot to do with why fewer than ten percent of the tenants will go anywhere near the Tenants Association. As one past-president remarked, “Her problem is that she’s never been laid,”—never surrendered control to the hot, juicy passions of physical ecstasy. And she is a good Catholic, which ruled out masturbation.
So I just let the “aren’t they all wonderful” attitude go by without comment. Apparently the aide and I see things from different perspectives, but that’s okay. She tells me she has lots of friends in this building, then we go on to washing the dishes—and she empties down the drain the garbage in the sink strainer, and I scream. WTF? What does she think a sink strainer is for if not to keep garbage out of the drain pipe? And, in this building, the drain pipes are particularly susceptible to backing up.
So we go around on that and other dish washing issues. And what I am learning is that she doesn’t do what she’s asked to do—a hearing problem? A paying-attention problem? Might she have a learning disability? Is there a failure-to-process issue? Is she just stupid and obstinate? It’s an open question, but one thing’s for sure: she is extremely argumentative about everything.
The aide has said that she can’t measure things, which is alarming because the single greatest portion of my assigned hours is for cooking. She says she only can cook things from boxes, and my heart sinks. Then she goes on to demonstrate her lack of competence. We are making iced tea and I ask her to put ¼ cup of sweetener in the pot. I tell her where the ¼ measuring cup is. She fills it half full, holds it out to me, and asks, “Is this all right?”
I ask her to fill it to the top and wonder how a woman who has fed a family for a quarter century can not know how to measure one-quarter of a cup. Then we have issues with the laundry: she counts one plus one plus one and insists it is two. When she leaves, she does not take her ice-and-water bottle with her. I gently put it in the freezer.
Now it is morning. I have read the greeting card. I have gotten the water bottle out of the freezer to thaw somewhat. I get breakfast, fill out the history for the immunologist I am to see in the afternoon, and get dressed and all ready to go to the market. Two days ago I told the aide that we would be going to the market by Call-a-Bus and she assured me that she knew all about that, too.
She arrives at 9:31 a.m. I give her back her water bottle. She asks what we are going to do today. I remind her that we’re going shopping by Call-a-Bus. She asks when. I tell her 9:52 by Blue Chip bus (which is a subcontractor of Call-a-Bus). We start downstairs. On the elevator, I tell her that I have to go down the block to pick up some papers from the lab but I’ll only be a few minutes. In the lobby, I ask her to wait out front. She declines, saying she’ll sit down inside. There are some perfectly nice benches outside, but—oh, well. Whatever.
She asks me what time Suburban is coming. I remind her that it is Blue Chip that’s coming, look at my watch, and say “fifteen minutes,” then I take off for the lab. It is 9:45 when I get back.
Blue Chip arrives at 9:48. The aide does not come out to join us. I go inside and wheel around the common areas. She is not sitting on the stones that surround the koi pond, nor is she sitting in the Community Room. She is nowhere to be found. I think of her remark about having so many friends here and wonder if she is sitting in the living room of one of these friends, oblivious to the time.
I go out and board the bus. The driver does the semi-complicated business of tying down my wheelchair and belting me in. Still no aide. The pickup time was scheduled for 9:52. Call-a-Bus runs on a schedule. The regulations require that the bus cannot wait more than five minutes beyond the scheduled pickup. And the aide assured me that she knows all about Call-a-Bus.
At 9:57 the driver shifts into gear and we pull out of the driveway without the aide.
It started a few years ago with the A-frame signs. The signs were about two feet wide and three feet tall and they advertised what was for sale inside the business. The signs were placed on the sidewalk in front of the business. In the beginning there was one; now there are 13.
The Crouse-Marshall business district consists of two blocks: Marshall Street is one block long and forms a T-intersection with the one-block sales area of Crouse Avenue with a total of about 42 businesses—street level, basement or second-floor. This two-block shopping area is exactly on the edge of Syracuse University. In fact, Marshall Street only has stores on one side; the other side has University buildings that house classrooms and offices.
After the A-frame signs came the sidewalk cafes. The two-block Crouse-Marshall area has a great many “restaurants,” ranging from Starbucks to Faegan’s Café and Pub (an upscale bar/restaurant with waitress service). Seven of them now have tables and chairs outside of their eating establishments on the sidewalk. The restaurants have to get permits from the city for these sidewalk placements.
I spoke with Sam White who is the Right-of-Way Permit Coordinator in the Central Permit Office in the Business Development section of the Department of Neighborhood and Business Development in the City of Syracuse—and sometimes those web sites are really helpful, aren’t they? Anyway, what Sam White—who was very pleasant, reasonable and informative—said was that restaurants have to apply for sidewalk café permits. On the back of the permit they have to draw the outline and specify the number of feet they want, and then the permit is issued. The problem, as Sam said and I affirmed, is that sidewalk cafes are subject to creep: the permit is issued for three feet and within a few years it has crept out to five feet.
So first we’ve got the A-frames and then we’ve got the sidewalk cafes. Now, here’s the problem: we’ve also got people using wheelchairs, walkers, crutches, canes and braces. The Crouse-Marshall area, with its drugstore, banks, clothing stores, grocery store, bars and restaurants, is the closest area—only two blocks away—from an apartment building that has about fifty residents who use wheelchairs. It is one block north of a nursing home with people who travel by wheelchairs and walkers. It is one block west of Crouse Hospital and its physicians’ office building, heavily patronized by people in wheelchairs, likewise Crouse-Marshall is about three blocks away from the Veterans Affairs Hospital, which gives a lot of traffic. Patients pushing IV poles come out of Crouse Hospital to go to the drugstore and buy cigarettes.
So now we have A-frame signs, sidewalk cafes, people in wheelchairs, and—this week—students. There are about 21,000 students at Syracuse University; about 3,500 freshmen, each accompanied by two parents, and all of whom want to visit “M Street”—the Crouse-Marshall shopping area.
And then somebody put up a place to sell posters. That place took up about eight feet of the sidewalk perpendicular from the curb, and perhaps 20 feet of the sidewalk parallel to the curb. It was now effectively impossible for a person in a wheelchair to travel down the sidewalk. The sidewalks are public property; they belong to the citizens, not to the property owners or the University.
So I wheeled up to one of the two young fellows staffing the poster place. English was not his first language, and he didn’t know what I was talking about when I asked him who gave him authority to use the sidewalk. Finally, what he told me was that “Mr. Jacobs” had told him to set up there on the sidewalk. The young man waved to the storefronts and said that this Mr. Jacobs owned many of the stores. And, no, he had never met Mr. Jacobs, but he could give me Mr. Jacobs phone number. Not necessary, I said, and went home.
The next morning I got on the computer, then called Sam White. His assistant said he was on the phone but would call me back. When he returned my call we maneuvered around as strangers do, then got to my complaint about the poster place.
Ah, said Sam. This morning the police ticketed them and shut them down.
Ah, cried I ecstatically, sometimes the system actually works!
Sam went on to tell me that when I first called he had been on the phone listening to an angry person who did not identify himself but who claimed to have applied for and been given a permit several months ago to set up the poster place. Ah, no, said Sam. He had no record of any such application being received or approved.
Well, says I, let me tell you about the conversation I had yesterday with the fellow staffing the poster place. So I tell Right-of-Way Coordinator Samuel White about “Mr. Jacobs.”
Ah, says Sam, in a voice filled with recognition. Mr. Jacobs owns a bunch of properties in Armory Square. Sam-the-coordinator being a cool guy, he doesn’t say anything else but I’m guessing it’s not the first time he’s had a run-in with Mr. Jacobs.
So I ask Sam a lot of questions, mostly about what the regulations are for sidewalks and what my rights are as a citizen, and Sam gives me lots of answers. I am, thank you very much, in pig-heaven: a citizen and a government employee are having a respectful conversation about the rules and regulations of governance. Sam and Anne are working together in a transparent exchange of information to ensure that the government is serving the people. I mean, this is so exciting! I’m going to run right out and vote for Stephanie Minor again, even if she isn’t running for anything.
Sam White then gives me the phone number for the Division of Code Enforcement. I call and get Tracey, a clerk, who tells me that the investigators are all out of the office until Monday morning. It is 4:45 on Friday afternoon and I think of the 3,500 students, 7,000 parents, A-frame signs, sidewalk cafes, and me and my friends trying to fight our way through in wheelchairs, so I persist. You can’t just shut down the government for the weekend, can you?
I only get a shower about once a week.
The bed sheets get changed about twice a month.
My income is $834/month. I spend about $60/month on private-pay aides.
Because there is no one to wash the dishes, I have to spend money I don’t have on environmentally bad paper and plastic plates and utensils.
Because there is no one to cook, I have to get Meals on Wheels.
My floors have not been swept, mopped or vacuumed in months.
My tables, shelves and windowsills have not been dusted in months.
Black mold is growing in the toilet.
My houseplants are dying.
I’m too tired to get out of bed today and don’t know what to do about tomorrow.
The director of Long Term Care wants me to go into Managed Care. I don’t want to be “managed”; I want to be free to make my own choices.
The county only contracts with five of the 56 licensed home health care agencies in Onondaga County.
The only people working as home health aides in the city are from the Southside and come with “attitude.”
Aides from the surrounding towns and villages will not come into the city either because they are afraid to drive there, or perceived racism. (In a random test of aides living outside the city, they perceived the city as being as much as 75% black. Fact: it’s 28% black.)
Aides are paid about $10/hour. Neither the director nor the commissioner know what the rate used to be or how long it’s been since it was last raised.
My last aide, who only had been with me two weeks, declared me a racist based on a single statement, and walked off the job leaving dishes half washed, laundry in the washing machine and a pot boiling on the stove. Why didn’t his agency tell him to finish his shift, then come to the office to discuss it? Why did the agency terminate me instead of the aide?
The previous aide was on her cell phone all the time. When reported, her agency took no action to discipline her. When I did, she resigned from my case, stating that I was “rude.” The agency fired me instead of her.
If the rate of pay for Medicaid aides were raised, would it draw a higher class of people to the job? If there were more aides than clients, would agencies start serving their clients instead of their employees?
Or is all this because I post blogs and file complaints when the service is below the standard set by law? Am I the victim of retaliation and discrimination because I speak freely?
Are the agencies in Onondaga County afraid to take my case because they know they are providing substandard service? Or is the county only contracting with substandard agencies? Or are there no quality agencies contracting with Onondaga County because the Medicaid rate is so low that there’s no money in it?
And the commissioner of Adult and Long Term Care says he doesn’t know what to do; he really doesn’t.
We interrupt this series of blogs about Medicaid patients being unable to get home health aides in order to bring you a short history of Call-a-Bus.
Call-a-Bus, hereinafter referred to as CAB, is public transportation solely for people who are disabled, not people who just are poor or old, although they frequently are that, too. CAB is a subsidiary of Centro bus company.
Centro is proud to say that they created the paratransit service prior to 1990 when the Americans with Disabilities Act (ADA) was passed. Big whoop. Some guy was made head of CAB but he only held the position briefly. Thereafter, Linda McKeown became the manager and continues to manage some 25 years later. She managed it as a substandard service, which is to say that it operated below the standards set by law. When an investigator asked me why I thought she did that, I replied, “I don’t think she’s smart enough to understand the regulations.”
First, you have to apply for use of Call-a-Bus. Back when I started using CAB in 2001 your application might not be acted upon for as long as six months. Fact: the law requires a decision with 21 days or you ride anyway.
The call-takers were bullies. They had absolute control over whether you traveled or not and they used that power to be mean. They were not serving the public; they were ordering it around. Riders had no rights. CAB operated on a take-it-or-leave-it basis. Nothing was negotiated as it was supposed to be. Rides were being denied because there weren’t enough buses.
Call-takers approved or disapproved ride requests on the basis of medical diagnosis, e.g., people without one iota of medical training were deciding if a person with cerebral palsy got to ride or not. Cerebral palsy can manifest as mildly as a gimpy arm or as extremely as being unable to see, limited ability to speak, inability to walk or self-feed. And, under Linda McKeown, clerks without medical training made judgments about medical diagnoses. CAB wasn’t supposed to be using medical diagnoses at all. Eligibility was supposed to be based on functionality: Can you walk one block? Can you stand for ten minutes? Can you climb three stairs?
The call-takers based your ride scheduling on the line bus schedule in your neighborhood, plus or minus one hour. If you lived in the suburbs that only had four line buses a day then you might have to accept at pickup at 10:00 a.m. for a lunch appointment downtown; your earliest return might not be until 2:30 p.m.
If you asked for a pickup at 4:15 p.m., you would be picked up whenever it was convenient for McKeown’s people to schedule it. Then you could be kept on the bus for hours. One person, going from James Street to a place near Carrier Circle, was kept on the bus two hours for a 12-minute trip.
Our major problems were with the call-takers, working with McKeown literally looking over their shoulder, but there also were problems with the drivers. For instance, one driver folded up a manual wheelchair and drove the bus with one hand while he held the chair with the other. Another driver folded up a wheelchair and left it loose, rolling up and down the aisle.
I was almighty distressed with all the problems so friends and advocates told me that there would be a meeting with McKeown and I should bring my problems and ask her. I attended the meeting at which McKeown sat on a raised platform above us and refused to answer my questions. I left in tears. Thereafter—i.e., after McKeown left—the attendees decided to form a committee to deal with the abuses and ineffectiveness of Call-a-Bus. It was named the Public Transportation Advisory Committee (PTAC), despite that some us intended to do a heck of a lot more than give advice.
Beata Karpinsky, director of advocacy at Arise, invited us to meet at Arise and thereby installed herself as functional head of the committee. Nothing happened until or unless Beata wanted it to. Linda McKeown was invited to come to the meetings, which she did. She came without any preparation, even to the point of having to borrow a paper and pencil if she wanted to make a note. She refused to give out any information. She would not tell us how her office operated, what the process was for ride scheduling, on what basis rides were allowed or disallowed, how many people she had working for her, how many buses were on the road, or any other thing. She was a tyrant, exercising complete control over the peasants.
After a couple years of this, Beata set up a conference call with David Knight, an attorney with the Federal Transit Administration’s Office of Civil Rights. Beata had first made contact with him about a year earlier but neither had followed up nor told us about him. David and I quickly developed an effective working relationship, which appalled Beata. “How dare you talk to him like that?” she asked. I talked to him “like that” because I was an intelligent citizen with a right to have her problems solved, and he was an intelligent government employee who believed he was there to serve the needs of the citizens.
David Knight told me that it is against the law for a paratransit company to deny rides based on “capacity constraints.” If Centro didn’t have enough short buses to carry the load then they had to buy more. If, as often happened, you couldn’t get a phone call through to CAB then Centro had to add more telephone lines and more call-takers. Disabled riders, by God, federal law and Attorney David Knight, had rights. And I was learning about them, which was to prove costly for Centro.