What the Post-Standard Didn’t Tell You

What the Post-Standard did tell you yesterday was that–

Cuomo in Syracuse on Wednesday to explain his proposal to improve care for New Yorkers with special needs

Syracuse — Gov. Andrew Cuomo will be in Syracuse Wednesday to promote his plan to create a new agency to address abuses among people with special needs in state care.

Cuomo, a Democrat in his second year, has proposed creating the “Justice Center for the Protection of People with Special Needs.” The center would have authority to track, investigate and prosecute abuse cases within the six state agencies that currently oversee care for disabled and developmentally disabled people.

Last year, there were more than 10,000 allegations of abuse against New Yorkers with special needs and disabilities in state operated, certified or licensed facilities and programs. Currently, the state’s Office for People With Developmental Disabilities is trying to fire 200 workers for allegations of abuse.

Cuomo’s actions come after a series of stories in The New York Times that described lax care of clients and investigations of abuse within the state’s multi-layered care system for people with special needs.

Cuomo will explain his proposed changes at 10:30 a.m. Wednesday at the Schine Student Center at Syracuse University.

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What the Post-Standard did not tell you is that Cuomo’s explanation is by invitation only, so don’t get all excited and think you actually can go and ask the Governor a question.  Why report the time and location and then not state that it’s a closed event?

The question I’d like to ask is whether CPEP will come under the jurisdiction of the new agency.  CPEP is the Comprehensive Psychiatric Emergency Program that is run by St. Joseph’s Hospital under the auspices of the NYS Office of Mental Health.  It is an horrific place in which abuses occur at least on a weekly basis, if not daily.  When you lock the door to a facility, you guarantee abuse.  The Office of Mental Health (OMH) has consistently failed to properly monitor CPEP.

On one occasion I got CPEP investigated and, in the process, learned that OMH knew there was a problem but wasn’t doing any follow-up.  CPEP “serves” about 8,000 people a year, and the Post-Standard has never been willing to investigate and report on this awesomely bad facility.

Does anybody think that the Post-Standard, which most certainly has been invited to Governor Cuomo’s presentation, is going to ask if CPEP will be covered by the new agency?

Yeah, right.  CPEP only affects 8,000 citizens who are marginalized, i.e., not the Post-Standard’s demographic, so why bother?

An Open Letter to Frank Kobliski, Executive Director of Centro Bus Company

Frank Kobliski, Executive Director of Centro Bus Company

CNY Centro
Syracuse/Onondaga

200 Cortland Avenue
PO BOX 820
Syracuse, NY 13205-0820

May 14, 2012

Dear Frank,

Yesterday I was at Shoppingtown Mall when Call-a-Bus paratransit picked me up in my wheelchair at 3:30 p.m.  All day, the sun had been shining on the roof of the bus and in the wrap-around windows, so it was very, very hot in the passenger compartment.  And, of course, the windows do not open on the short buses so there was no relief from the heat.  It is a sealed box with the temperature rising; it is an oven.

When I had gotten home from Syracuse University commencement at 11:30 a.m., the temperature in my apartment was 80 degrees.  Based on that, I would estimate the temperature in the back of the bus to have been at least 95 degrees.  At home, I turned on the air conditioning, so, on the bus, I asked the driver to turn on the air conditioning.  (To the best of my recollection, the driver was not wearing a name tag or the Centro uniform, as required.)

He said the air conditioning was on.  It wasn’t.  I’ve been riding Call-a-Bus since around 2001; he’s only been driving a couple of months.  The air conditioning system on short buses is very loud and if it is operating then you have to yell to be heard above it.  I wasn’t yelling.

From his gestures, he may have been indicating that the air conditioning was on in the driver’s compartment.  The short buses used by Call-a-Bus (CAB) not only have a window that can be opened next to the driver but also they have two air conditioning systems:  one that serves the driver and another one that is designed for the passenger space.  In short, the driver can be quite comfortable while the passengers are suffering.

Many CAB drivers simply don’t care about the comfort of their passengers—this driver was one of them.  When I asked him to call the dispatcher and report that the air conditioning wasn’t working, he ignored me. 

The effects of excessive heat are multiple:

• Heat causes irritability and loss of comprehension, thus compromising the rider’s ability to effectively make her needs known to an uncooperative driver.
• Heat increases heart rate and blood pressure.  CAB is carrying only disabled riders, many of whom already have heart and blood pressure problems and therefore are placed at risk of heart attack or stroke.
• Heat causes fluid retention, which takes a day or two to resolve.  The damage is not something that disappears as soon as the rider gets off the bus; the suffering continues.
• Heat affects women worse than men.  The majority of CAB riders are women.
• Heat has a worse effect on overweight people.  Many CAB riders are overweight because their disabilities make them sedentary and unable to engage in normal exercise.
• “Age (particularly for people about 45 years and older), poor general health, and a low level of fitness will make people more susceptible to feeling the extremes of heat.”  That is a description of every CAB rider.  This is not about comfort; this is about medical danger.

By the time I got off the bus, my fingers were swollen, I had a headache, and I was tearful; I was sick the rest of the day.  You turned my pleasant afternoon outing into a day of sickness and despair. 

While exiting the bus, I called the CAB cancellation number (442-3434) and got Tim, who is a relatively new employee.  Tim is currently the best employee in the CAB department.  He is intelligent and immediately understood that not having air conditioning was a dangerous situation.  He made certain that I was safely off the bus, checked and discovered that it was the driver’s last ride, and said he would follow up on it.

Every summer I have been filing complaints about CAB short buses running without air conditioning.  In most cases—quite possibly all cases—it is because the driver doesn’t know how to turn on the air conditioning in the passenger compartment.  You are putting people in the driver’s seat who are substitutes, inexperienced, poorly trained or irresponsible.  STOP IT. 

• Make it a clearly posted policy that any driver who leaves the garage without knowing how to turn on the air conditioning will be fired upon returning to the garage.  (Torturing sick people is not a minor infraction.)
• Any driver who is in a bus without functioning air conditioning is to report it to the dispatcher immediately.  (Drivers consistently refuse to report no air conditioning while on the road.)
• Any dispatcher who is notified of nonfunctioning air conditioning is to swap out the bus immediately.  (What the CAB employees currently are telling the driver is “Well, you have a break in about an hour, so you can bring it in . . .”)

According to The Weather Channel, “Even with the windows cracked on a 70° F to 80° F day, while it may feel comfortable outside, the inside of your car can heat up to over 100° F in minutes.”  It is a crime to leave a dog or a baby in an overheated car, yet your drivers leave disabled adults in overheated buses every summer.  I have repeatedly filed complaints; you have not fixed the problem.  Frank, your wife has had a critical heart condition—would you leave her in a 100-degree bus?  No?  Then why do you leave other human beings there?

So here’s what I’m going to do:  the next time I’m on an overheated Call-a-Bus and the air conditioning isn’t working, I’m going to call the police and have the driver arrested, and I’m going to call television stations and have the arrest filmed for the evening news.

I will do whatever it takes to protect people who are disabled.  What will you do?

Very sincerely,

Anne C Woodlen

A Little Something for Everyone

Wherein we visit the District Attorney’s Office, the Post-Standard newspaper, HUD management and Time Warner, and are not pleased.

The Arrogance of the District Attorney’s Office

McCarthy Avenue is a one-block street that runs from State Street to Townsend Street next to the Public Safety Building/Justice Center.  It is a narrow street that has diagonal parking on one side and no parking on the other side—except that was the problem.  All sorts of cars were being parked on the sidewalk by people who thought they could get away with it—off-duty police officers, unmarked Sheriff’s Dept. vehicles, various other employees in the buildings, etc.  The problem was that because of the cars on the sidewalk I couldn’t get my wheelchair through, so last year I finally filed a complaint with Mayor Miner and Chief Fowler.  Orders were given and thereafter no one parked on the sidewalk—until yesterday.

I was wheeling home and found my path blocked by one single car parked on the sidewalk right in front of the Stop sign.  It was a dark blue Mazda, and I called it in to 911 at 6:55 p.m.  After making the call, I noticed a placard on the dashboard.  It had the emblem of the Onondaga County District Attorney’s Office and the No. 20.  It said it was a temporary permit for one day only (date not given), and it had an investigator’s name illegibly handwritten.  The card appeared to be faded and laminated as if a “one-day” permit had been turned into an enduring permit.  Further, most of the diagonal parking spaces were empty, suggesting that the driver of this car had come to work during the day and been illegally parked for an entire shift; he was not working an emergency.

So what we have is the highest law enforcement agency in the county totally disregarding the law, which is apparently what you can do if you work for D.A. Bill Fitzpatrick.

The Irresponsibility of the Post-Standard

In the lobby of my apartment building—which is a HUD-subsidized building for people who are both poor and sick—there is a Post-Standard newspaper box.  On a random basis it takes your money without releasing the door so you can get a paper.  When the box had taken me for more than $3.75, I finally called it in and requested a refund.  The call-taker said she would take care of it in a way that made it sound like I’d get a check within a week.  Fact is, I never got a cent.

Then the cost of a newspaper went from 75 cents to one dollar, and the box stole from me again.  If it’s stealing from me then it’s stealing from other people in this building.  On an income of $800 a month, you can’t afford to lose one dollar, let alone five.  So I called the Post-Standard again and this time I talked to the boss who told me that the Post-Standard does not own the box; the distributor does, but he said he would call the distributor, as if he’s doing me a favor.

Other people told me the distributor’s name and contact information should be posted on the box.  I checked; it isn’t.  Then the boss called me back and asked if I’d heard from the distributor.  No, I hadn’t.  What’s to hear?  You have my name and address; send me a check for $4.75. Then the apartment building newsletter comes out with a note that people are stealing from the newspaper box and if it continues then the box will be removed.  It does not say that the box is also stealing from the people.  I would guess that when the distributor comes up short, he bitches to the building management and that when he comes up long, he pockets the overage.  He certainly isn’t going into the manager and saying, “Whoops, I’ve got too much money today—I owe somebody.”

Apparently the Post-Standard sells the newspapers to the distributors but takes no responsibility for making the distributors reveal themselves to the clients, so the rip-off goes on endlessly.

Locked In or Out:  HUD Management

The aforementioned HUD-subsidized apartment building is a secure building, i.e., the doors are locked all the time and for a non-tenant to gain entrance he has to call on the intercom and get someone to buzz him in.  This week we got a new maintenance superintendent.  He told me that he’d been a state trooper for twenty years, then he referred to this building as “a locked facility.”

The difference between a locked facility and a secure apartment building is that one keeps the bad people in and the other keeps the bad people out.  I am alarmed at what this portends for the future.  Our last supervisor was a born-again Christian who saw his job as one of service to poor people, and no one will tell us why he was fired.  Fact is, management wouldn’t even tell him why he was fired.  Prison guards:  1; Christians—0.

Time Warner

My Time Warner bill was about $10 higher this month than last month, so I called to ask about it.  You know what they told me?  They can charge up to $2.50 if you call information and ask for a number.  Then they bill it as “Adjustments/credits.”  It’s a charge!  My “adjustment” this month was $5.97 but the customer service (hah!) guy said it came to $8.91.  “How?” I asked.

“Tax,” he said.

“Nowhere is the tax rate billed at 50%,” I said.

He changed the subject.  I insisted that he answer my question.  He said, “If you go on the Internet you will see—.”

“No,” I said, “I won’t.”  I have a learning disability and trying to do that sort of thing on the Internet reduces me to tears.  So he said he would check but it would take some time, and he put me on hold without asking if I could wait.  I couldn’t, so I had to hang up.  Time Warner—1; Christians—0.

I don’t use the phone book because it’s too heavy and I have a debilitating muscle disease, so here’s the solution:  If you call 435-1900 you will get the Reference Dept. of the Onondaga County Public Library and they will look up telephone numbers.  You’ve already paid them through your taxes.

Opportunity of a Lifetime!

You get to meet me!

My awesome aide, Amelia, is taking a week’s vacation from May 22-29 so I need someone to cover for her for a few hours.  Wash dishes, do laundry, cook–stuff like that.  Pay is about $10/hr, depending on experience.  University area.  If you’re interested, shoot me an email at ribs2007@yahoo.com.

Crawfish, My Rss (Part II)

Continued from May 8 . . .

I wheel back to the other end of the block and get more tickets, then approach the Cajun Café, which is selling gumbo and jambalaya. The problem is that it is the only booth that is selling gumbo and jambalaya so there is a long line. In fact, the line is double, blocks access to every other part of the festival, and you have to wait in it for twenty minutes.

While I wait, I consider how hot the crawfish were and the likelihood that these Cajun foods may be too hot, too, so I decide to get samples of gumbo, rice and beans, jambalaya, pulled pork and coleslaw. When I get to the head of the line, the woman asks what I want. I say I want samples of everything. She says, “No. We don’t do that.”

I stare at her, then point to the paper taped on the table in front of her which says, “Samples of anything $1.” She gets mad at me but decides she has to cooperate. “What do you want?” she asks.

“Gumbo,” I say, “jambalaya, pulled pork and—.”

And she says, “We’re all out of jambalaya. You’ll have to wait.”

The Crawfish Fest is scheduled to run from 11:00 a.m. to 7:00 p.m. It is now 12:30 p.m. and the only booth serving jambalaya has run out. I already have waited twenty minutes but will have to wait more. No, I don’t see that happening. So I get pulled pork, which is cold; coleslaw, which is perfect; rice and beans, which are okay; and gumbo, which is really, really good. I wish I had gotten a full portion of gumbo, but it’s too late now—and I’m not going to wait in that line for another twenty minutes—so I decide on pizza or something from another booth.

This necessitates wheeling—for the third time—back a block to where the ticket booth is. When I get there, the menu taped to the table does not list pizza. I ask the waiting woman how many tickets I need for the pizza. She says I don’t need any—I can pay cash.

“What?” I say. “The program says ‘Tickets Only—No Cash.’”

“That’s just for the crawfish and Cajun Café,” she says, “not the other booths.”

I say something really nasty under my breath. All the thousands of people who will come here today will be dutifully trudging from one end of the block, where the food is, to the other end of the block, where the tickets are, because NOWHERE does it say: MONEY IS OKAY!

My therapist used to tell me that my main problem was that I expected things to work, e.g., I expect festivals to be run by competent adults. Sheesh.

So I go to buy a piece of pizza—which turns out to be a hotdog—and then I actually enjoy the festival. The sun is warm and the breeze is soft. The people are friendly and the T-shirts are interesting. Little kids run loose, looking at everything with puzzled fascination. The music ranges from good to really good, particularly featuring Weather Machine, which has two excellent vocalists, either of whom I would be glad to take home for the night. Later I heard that the Fest also ran out of crawfish.

So here are my concluding recommendations, in no particular order:

1. Get the cops out of clumps and direct them to chat up the citizens they serve.

2. Put the ticket booth between the only two food booths that it serves.

3. Have enough food.

4. Have enough servers so the lines are short.

5. Put all the booths on the street where they will be wheelchair accessible.

6. If you want crawfish and jambalaya, go someplace else.

7. If you want to donate to Operation Southern Comfort, mail a check.

 

Crawfish, My Rss (Part I)

I went to “Crawfish Fest 5: Taste of Louisiana” in Clinton Square on Saturday. It was overcast and breezy, which wasn’t very pleasant. On Salina Street, at the entrance to Clinton Square, the first thing I came to was a tent that was selling tickets for the food. You couldn’t pay cash; you had to buy tickets. Well, hum, how about that? So I buy five dollars’ worth of tickets, not knowing what I’m going to want to eat.

The second thing I came to was half the booths for the festival. They were up on the grassy area behind a curb on the west side of the square. They were, in fact, completely inaccessible to wheelchairs. How about that? The downtown summer festivals attract more people in wheelchairs than any other event I attend in the course of a year. People who are disabled like outdoor festivals—and the City of Syracuse does not plan for us. Syracuse, you will be getting a call.

So I keep traveling and the next thing I see are four police officers standing on the corner talking to each other. They are wearing black shirts, black pants, black shoes, black belts and black gun holsters. (“The Blackshirts were Fascist paramilitary groups in Italy . . .”) The only color is the yellow on the handle of the Taser gun. There’s an attraction for you.

Then I come to a booth that is selling some kind of pastry. The program says you can get a sample of anything for $1, so I sample this. Some nice fat ladies are rolling out yeast dough, cutting it in squares, deep-fat frying it and serving it up sprinkled with confectioner’s sugar, and it is good. I could go for about twenty of these, but don’t. Just because I’ve given up my vegan diet doesn’t mean I’ve lost all sense of what is healthy. (http://annecwoodlen.wordpress.com/2012/05/07/my-mothers-meatloaf/ )

At this point the sun comes out, which is really, really nice. Hey, this is Syracuse and we’re jonesing for sunshine. Then I turn and see another corner which also has four police officers standing in a group talking to each other. Okay, Chief Fowler, you and I need to have a chat. The Syracuse Police Department has a very bad image in this community. We do not like police officers. Here and now, in this, the first festival of the summer, you have a chance to do something about that.

Direct your officers that unless they are involved in police business that is occurring in the present moment, they are not to speak to each other; they are to walk alone. A solitary police officer, hanging out in the public square, is approachable. I do not, personally, know a single human being who will talk to “the police” if two or more are standing together, but most people I know would chat up any police officer who is standing alone. If you want us to treat you as nice, helpful human beings then you must let us get to know you as such. Be askable. And get rid of the black shirts; go green.

It is now time to contend with the main reason for this festival: the crawfish. Ew-w-w! I wheel up to the table and order a sample, which is two, served in a paper box. They are disgusting—but I have never let a little thing like total grossness scare me off, even if they are laying there with their eyes bugged out and their legs sticking all over the place. They look totally ready to climb out of the box and walk across my hand. EW-W-W!!

So I look at the lady behind the table and ask, “Can you tell me how to eat these things?”

“No,” she says.

Uh, okay . . . not exactly working on customer relations skills are we?

So I turn to the two guys waiting next to me and ask if they know how to do this. The first guy says, “Not me. I’m a virgin here.”

The second says, “Yeah. You twist the tail off then sort of squeeze it and suck out the meat.”

By then the “no” woman has gotten a young man from the boiling pit in the back and he is telling me, “Twist the head off—.” Okay, heads or tails, which is it? I withdraw to a distance where I can have a little privacy as I make a fool of myself, and twist and squeeze and suck. What I get for this effort is one bite of meat that is cold and too highly seasoned for my tolerance, but, okay: I’ve done it. I’ve eaten two crawfish. Now I want some real food, so . . . (To be continued)

My Mother’s Meatloaf

I have quit the vegan diet, and here’s why.  Ten days ago I wrote “Two Hearts on Whole Wheat” (http://behindthelockeddoors.wordpress.com/2012/04/27/two-hearts-on-whole-wheat/) about Dick and me.  We both had gone vegan about eight months ago, and he had just had his annual physical.  The blood work showed that his cholesterol and glucose levels had dropped back to normal after having been terribly high.

Mine hadn’t—in fact, my diabetes was getting worse.  I had stopped checking my glucose level in February because (a) I was already doing everything I could to lower it, (b) the glucometer test strips were prohibitively expensive, and (c) it was “only” 250, which was considerably lower than when I was hospitalized.  But I had been feeling really unwell lately.  I ruled out inadequate fat, sleep or sunlight, the presence of fever and a few other things as causes.

Then, a week ago, it occurred to me to check my glucose.  It was 423.  Oh shit.  And my urine output was way too high.  When there is too much sugar in the system then the body tries to cleanse itself by dumping sugar into urine to get rid of it.  Urine glucose should be zero; mine was 500.  And I was groggy and had just slept 21 hours out of 36.  What to do, what to do?  My doctor said that I would end up in the hospital with dehydration within three to five days.  (What he didn’t realize was that I wouldn’t call an ambulance.  No way am I going back to the hospital.)  So he offered a low dose of the drug metformin and (die or take drugs?) I accepted.

The big difference is that this doctor actually listens to the patient; instead of believing the latest studies, he believes the patient.  When I was in the hospital last summer, the hospitalists loaded me up with normal doses of medication and I had bad reactions.  This doctor (who’s the boss doctor at the hospital, which apparently means not only that he practices exceptionally good medicine, but also that he gets along well with people) proposed a low starting dose.

For most people, including Dick, the starting dose is 1000 mg. a day, and it can go as high as 3000 mg.  I started at 250 mg. and, with only a few bumps in the road, I not only tolerated it, but it worked.  Today my glucose is 251, my urine output is down, and I am sleeping better and therefore waking up in a better mood.  And I have quit the vegan diet. 

In “felt” terms, I wanted my mother’s meatloaf.  For days, all I could think about was my mother’s meatloaf, which wasn’t that wonderful, believe me.  It was dense and gray and had too much salt and not enough other seasonings.  Mom made it with medium-grade hamburger, white bread, eggs, celery, onions, milk, and I don’t know what else, then she baked it in two loaves and served it to her family of seven.  What wasn’t eaten hot was available for cold sandwiches served on white bread and slathered with catsup.

When I moved into my own apartment, I tried to glean recipes from my mom but it didn’t work very well because she never measured anything, including the ingredients of the meatloaf.   She couldn’t figure out exact measurements so my meatloaf never tasted like hers.  Over the years I tried a dozen different recipes but none ever tasted like My Mom’s Meatloaf.  Then, last week, my friend and I went out to dinner at a nice little restaurant and the special for the day was meatloaf.  It was an upscale restaurant, not a diner, and the meatloaf was splendid and served with a port wine sauce.  (Never has the humble meatloaf been so fancied up.)  But it wasn’t My Mother’s Meatloaf.

After the shit hit the fan and it became a case of lower the glucose level or go into a coma, I quit the vegan diet.  I had been eating well on it—pear and rhubarb tart, homemade hummus, curried zucchini soup—but what I now craved was comfort food.  I wanted the food of my childhood; I wanted My Mom’s Meatloaf.  I know I can’t make her meatloaf, but I have gone back to tuna fish salad, hotdogs, and scalloped ham and potatoes.  Hamburger and chicken are in the freezer and we’re going to make chili con carne today.

I craved comfort food, and all “normal” food became comfort food.  The vegan diet was stressful, and stress raises the glucose level.  Dick’s only health problems were diet problems—high cholesterol and high glucose.  My problems are respiratory, orthopedic, kidney, immune system . . . the list goes on, and when you change one thing then you change everything.  Doctors call this “co-morbidity,” meaning that one bad part acts on another bad part but what it actually means is that all your parts are connected.  All your body’s systems interact.

I’ve been eating meat, fowl, fish and dairy for sixty-five years, and for fifty-five of those years I took drugs.  Based on my experience, I believe that you can recover from almost any disease or disorder that occurs naturally, but you cannot recover from the damage done by man:  drugs.  My body’s ecology includes meat.  Without it, all my systems were confounded.  Where’s the meat? they kept asking each other.  Where’s the meat?

Amelia, my 23-year old aide, has been a vegetarian since she was fourteen and is a marvel of good health and vigor.  Dick has been a vegan for a year and has made an astounding recovery from ill health.  Me?  I’ve got too much wrong with me to tolerate the stress of transitioning to vegan.  I need meat.  Amen.