NYRecreate, I want to go home,please . . . .. 8-26-14

I want to go home, please … 8-26-2014

It was a sprawling building with entrances on all four sides and a great abundance of parking, but no legal handicapped parking. There was no sign inside or out, designating the location of the new NYRecreate Offices. I was told later when they are “up and running” and decide on a name, they will put a sign up.

So, while I knew the suite number, I had no indication which one of the six doors to use. I found a human who told me their suite was inside the north door. There was a high curb that jarred and twisted my wheelchair axle. None of the doors were accessible. As I entered the second hallway I was confronted by eight hefty carpeted steps. Barbed wire! Half an hour, multiple directors, multiple outside entrances later, I passed through the glass doors to an unassuming NYRecreate office.

I spent the next two hours sobbing, sitting in the conference room discussing my case with the coldest manager I ever met. She said all the right things. But, she never blinked. She offered no unsolicited information. She told me she was working very long hours, but when I asked what she was doing, she said listening to homeowners like me. It was obvious, and she admitted, she had absolutely nothing to offer anyone who needed help.

I was snot down to my knees, oozing into my mouth, dripping onto my blouse, from crying. Finally, I asked her if she had a tissue. She said, “They are out in the waiting room.” She never moved. It was the strangest reaction. I continued weeping, all slobbery, as she sat stoically observing me like I was a bird in a cage: representing disaster management.

I told her I came here unannounced because since Pro lost the bid and the new company took over, and we got letters that we have new case managers, no one is answering phone calls or emails. She said Pro was not gone. She said that the reason emails have not been answered is because the new company came in expecting to get up and running and use Pro’s email system. But Pro would not let them, so, those email addresses that were sent to us all in letters of Introduction were always invalid. The email that will supposedly get to a caseworker is: your caseworker@nysandyhelp.ny.gov. I asked why we were never notified of this and she said, because they are not “up and running.” I asked why we were not notified they had moved, and she said, “We sent letters out three days after we moved.” I said that was odd.

I told her that everyone seems to be on vacation and that word is that they will not be doing business until mid October. She asked where I heard that. I said Facebook. She said, “Don’t listen to anything on Facebook. No one has spoken to me.”

I asked if the new company is operational. She said something about the contract not being settled, that Pro won’t let go. Issues must be resolved. I asked why. She said, “Because they are greedy.”

I did not understand. I said “Well, why don’t you do something?. Why don’t you go to the Governor: tell him what is going on.”

She said, “I can’t go to the Governor. I work here.”

I said, “No one is paying my hotel. I have no money. I need to go home. When are you going to be operational?” I was crying. I said, “I want to go home. I am getting sicker every day. I need to go home. People are suffering so much: so much suffering. People are living in gutted houses. Children are living in moldy homes. People are dying. So many people have died, from neglect: from waiting too long. It is horrific! Is that what they want, for us all to die?”

She said, “Why would they want that?”

I said, “Because it would save the state a lot of money.”

She said, “I don’t think that is what they want.”

I told her the story about the Governor running away from reporters asking him to talk to me after the Rally in Holbrook: that he jumped into a car and sped away from Sandy Survivors and media running after him, after I got blocked by stairs. I said it was a cowardly thing to do to a lady in a wheelchair who had formally requested through his Albany Office to meet with him.

She said robotically over and over in response to my questions, “We are in a transition period. When the issues are resolved, we will take care of your case.”

I said, “When will that be? How long is that? I need to go home! People are suffering. We all need to go home.”

She said over and over, “I have no idea. We are undergoing a transition.”

I said, “So you are not operating.”

She said, “I am here every day. I am meeting with homeowners. I am listening to them. I am working very hard.”

I said, “You are listening but you can not do anything. You are on hiatus.”

She got very agitated and said that was not correct. “Hiatus infers we are absent, not here. That is not the case. We are working every day.”

I said, “So you are working. But you are impotent. You are in transition and can do nothing until the issues with Pro are resolved. You have absolutely no idea how long that will take?”

She said, “That is correct.”

Barbed wire!

Advertisements

NYRecreate, Are U In There? 8-5-2014

NYRecreate, Are U In there: 8-5-2014

Constant excruciating pain is my reality, from loss of $50,000 in medical equipment during SuperStorm Sandy over 21 months ago. It is August, and with damaged temperature control due to severe autonomic dysfunction from SCI, I am at extreme hazard in hot humid weather. I am living in a hotel room: not home. When I need to go out in my electric wheelchair, I must take supplies stored in my wheelchair van out, and put them in the hotel room. When someone is coming to visit me, I must put those items back into the van. This is time-consuming and difficult: a small price to pay for a place to be. My electric wheelchair must be kept in the hotel room, because the battery discharges quickly in the elements. My garage drowned. So, when I need to go out, I must charge my wheelchair and move it through the narrow hotel room door, out into my Rampvan.

Invariably the chair veers out of control when I gun it to get over the marble threshold, and I gash the door. I touch up the white metal surface with a paint pen before I leave, and usually again when I return. Before I leave, I place orange cones in two parking spaces, hoping that no one will move them and claim the spaces.before I get back, or take the cones home once more. I hope my key card does not turn red when I return, because I cannot get to the office in the wheelchair. Pulling out of the parking space, I know for sure that I will never ever be as comfortable or secure as I was on October 28, 2012, making 100 meatballs to freeze for Christmas buffet in my warm, fragrant kitchen. And I know that nobody gets it, or cares!

All this is only relevant to illustrate that it is not simple for me to go out into the world, living in a hotel room without what I need to function with SCI. The systems are harsh, inflexible, and irrationally judgmental.. They circulate paperwork that I am “difficult,” “hard to please,” and “uncooperative” if I voice what I require. In the horrific world of Disaster Programs and Agencies, different needs translate to a person who is “uncooperative.” If you hold up the line, they make you pay for it!

I am in my van heading for NYRecreate in Farmingdale to deliver the Independent Appraisal I am required to submit to Appeal my Acquisition Offer. I breathe a long deep sigh of relief that I made it this far, and I want to go home. But, home is gone! Comfort is gone! Security is gone! There is cement all around me. I follow the line of a faux stone wall to Sunrise Highway, easing very slowly down the parking lot exit ramp so that my Rampvan does not bottom out. I remember my birthday six weeks after I got my van. My birthday present was a sidewalk the width of my yard, and a ramp from the street to my driveway, because my Rampvan was totally unable to enter or exit my own property. I was so happy and grateful for that ramp, and all the structural access modifications that were installed in my house and property. That was my norm. I was not different there. I was accepted for what I am. I am crying now, driving.

I cry every time I venture into my post Sandy world. There is barbed wire everywhere, walling me off from people who did not live through Sandy, walling me in to failing Programs and Agencies spewing incompetence and fraud, slashing me as I try to move forward, binding me to the rubble of yesterday, piercing hope. When I am inside the hotel room, I have very little that is mine. But I also have no visuals of the world I knew. When I go out, and I see familiar places, it cuts me deep with what I lost. When I go to a store, everywhere, I see what I need, what I lost. When I see people driving to a destination, I know that I have none. No matter where I go, I do not really belong: I do not want to be there. I wander alone with a pinpoint focus on home, in a world that went on without me and forgot who I was. I must create what I need, from nothing. I am filled with panic, fear and hopelessness, choking down silent screams: alone in a world of strangers and things.

I drive east on Sunrise Highway and turn north on Route 110, noticing that all the traffic lights are off. I wonder if there is no electric in all of these houses and businesses. How vulnerable we can all become in a moment. I wonder why the electric is off. I maneuver around police cars with flashing lights, snarled traffic, and irate drivers. I am not impacted by them: life crises seem so trivial now.

As I pull up to the NYRecreate Office building, I notice the windows look dim. I surmise their electric is off also, and hope the combination lock is working. I am wondering why my new caseworker did not answer my calls this morning telling her I was coming. I am thinking about the fact that the NYRecreate’s Offices are not accessible to anyone in a wheelchair. The main entrance of the building is open to all. But people using wheelchairs must request, if they can get through to anyone, to go through a heavy metal door on the side of the building that has a keypad combination lock: so illegal. They don’t get it!

I called my new caseworker for a third time, and listened to a message that said she would get right back to me. I had no general number for the NYRecreate Office. They always said call the 1-800 number. I parked in the illegal handicapped parking, with its three-foot access aisles, because I did not want to sit out in the sun in my wheelchair waiting until someone might come along and might let me into the building. I figured I would watch from the car to see if someone came back from lunch. I always park on the other side of the complex in the van spaces by the child care, far away from here, just so I can get out of my car with the electric wheelchair. Last year, I came to deliver papers. I had never been given a phone number. I sat in my wheelchair for one hour in the freezing rain outside the combination door, knocking on the windows of the conference rooms, trying to get someone to notice and open the door. After an hour, shivering, I was finally let in by someone returning from lunch.

So here I am today sitting outside NYRecreate Office in the heat, feeling like the second-class citizen that I have become operating within Disaster Recovery, for an hour, wondering how I am going to deliver this paper that I am required to file. I see in the distance a man gardening. I begin watching him, trying to drag him down to this end of the complex with the power of my. mind. After about a half hour, he starts walking across the grass toward me. I begin strategizing. Closer, I shout as politely as one can shout, “Excuse me sir, can you please help me.” Oddly enough, he is a kind man, and he comes over to the car and says, “What do you need.”

I asked if he could get me through that door, because I had to deliver this paper. He said he surely would do that. I began the process of getting the wheelchair out of the car. I first had to park sideways in three parking spaces so I could get back into my car. He was very patient and friendly, and there was absolutely no one within eye-shot: but I was oddly not afraid, because I was focused on getting into that building. He punched the keypad: so easy when you know the numbers. He struggled to hold the heavy metal door open as it tried to swallow me. The small vestibule was crowded with boxes and the hall inside was strewn on all sides with empty boxes. I thought it was a mess. There were several men in suits standing and they asked the handyman what I was doing here. He explained that I wanted to deliver a paper to NYRecreate. They told him to take me to the front desk. I wondered why.

The front desk turned out to be at the other end of the complex and I found myself grateful that I did not bring my broken electric wheelchair that only runs for 20 minutes. As we turned the corner, there were suddenly three people staring at me from behind a desk, like I had spaghetti on my head. I guess they were wondering how I got in. The kind handyman told them I came to give some papers to NYRecreate. He told me when I was ready to leave, to call him, and left me there by a stairs I could not descend, on the inside of a locked combination door. Barbed wire!

The receptionist quickly offered, “NYRising moved.”
I wondered why I had to come all the way back here to be told.
Her words smashed against my weary head. I was confused, frustrated, angry.

“NYRISING MOVED?” I exclaimed, “You have GOT to be kidding me!”

She said she was not kidding, and pointed to a sign on the wall.
I exclaimed, “”They move, and they don’t even tell us? What is that? They don’t bother to tell people.”
Everybody just stood there like I was the unreasonable one. But I wasn’t ready to accept that they were gone yet. They should be where they are supposed to be.

“Do you have any idea how hard it was for me to get here?” I protested.
They stared at me blankly.
I rambled on about how my new caseworker did not answer my calls or emails, about how my former caseworker was so competent, and how NYRising was implemented before it was designed. I saw my words amble out the front door and down the stairs. I was standing there pointless.

I asked the receptionist to write down the new location of NYRecreate. She copied the name address and phone number off the wall. She said they moved 4 miles north on 110. She said she wanted to call the new NYRecreate office to tell them I was coming to deliver the paper. But, she asked them if she could deliver the paper instead, on her lunch hour. I was shocked. I wanted to make sure it got there myself. It was important. But, I knew that when I got to the new building, I might not be able to get into it, given NYRisings’s lack of disabled access in the two offices I have used. And, I was wearing down from the pain. So, I accepted the receptionists unexpected offer, with gratitude and puzzlement. Why is there such rampant cruelty in the world, and random acts of unexpected kindness?

Bulldoze the House! 9-28-13

Bulldoze the House! 9-28-13

It is eleven months tomorrow, since my house went down in SuperStorm Sandy, since everything that was my life ended, and life became one dark hotel room that most days I cannot leave because I have become too sick without my medical equipment. Today, I am awaiting answers for new-found, soon to be broken, promises. Brand new requirements and emerging rules are being shoved down our throats, as helpers back off once more, intimidated by bureaucratic intervention aimed at rectifying the initial disaster management mistakes: all this at the expense of the last homeowners still standing un-renovated.

Municipalities and building departments that closed their eyes immediately after the SuperStorm, and let homeowners patch together houses with substantial damage, and inhabit them, are now redefining the rules, erecting insurmountable barriers, and preventing unfinished homeowners from restoring their homes as others were originally allowed, preventing return to home. Agencies are now demanding outrageous expense of homeowners and unprecedented structural modifications: proposing turning our scenic coastline into a grotesque collage of towering cement and staircases. We are told that officials want every house on the south shore of Long Island elevated.

Governmental agencies and hastily-formed committees plan permanent modifications to our land and communities, overreacting, instead of analyzing, evaluating, misunderstanding our environment and Long Islander’s relationship with the land, and the sea. Federal, state, local agencies and charities are conducting chat meetings to discuss the failures of the disaster/restoration process and results, untrained in the task at hand, receiving huge salaries, coffering millions in allocated and donated funds.

The Concert money, donated by well-meaning ordinary people to help their neighbors, is withheld from the neediest, by charities facilitating slow-moving non-programs helping a paltry handful of people. Federal, state and donated monies are eaten by administrative costs/salaries, not filtered to the people, failing recovery.

Gloom moves over the restoration process, as prejudicial treatment of homeowners located on newly drawn flood plains, spreads panic, and threatens destitution, bankruptcy and permanent homelessness. Families inhabiting the wetlands for generations are forced from land their great great grandparents were born on, not by fear or inability to cope, but by new prohibitive government financial barriers, rules and regulations proposed to prevent this from happening next time. Can one really predict how high the tides of the next freak event will rise?.

New York State set up the NY Rising “Grant” Program, that is bankrupting, the neediest. Applying to that Program has become the criteria “charities” are using to give people assistance. The “charities” are demanding to be paid by NY Rising for providing “free help.” People who do not apply to NYRising are summarily refused “free help” and/or materials by charities. NY Rising funds, are charged to the homeowner for five years, before they become a grant. Also, the five-year clause requires that the homeowner not only own the house, but also live in it, for five years after receipt of funds. This way, the State proposes to repopulate neighborhoods and ensure that communities continue to exist. However, the Program is hurting homeowners: because it takes choice away from the homeowner, who cannot freely choose to stay in his home or leave, it allows for no special circumstances, and because no charity will help him if he does not pay them with NY Rising Funds: it excludes him from help from almost every other program. Also, NY Rising is “recommending every home that applies elevate the house,” at a price tag of almost $100,000. Houses on flood plains and low elevation that do not follow the recommendation and elevate, face astronomical flood insurance rates next year.

Programs are staffed by hastily-trained people, operating with cell phones disconnected. Programs are failing the neediest. Charities are stockpiling money and supplies. Everyone gives a different answer: nobody knows nothing. The system is making it impossible for those left standing, withholding Certificates of Occupancy so that people cannot live in their homes or sell them, unless they elevate them. New rules and regulations penalize homeowners on flood plains, and those who have not yet restored their homes. Destitute homeowners are forced to take out outrageous loans to elevate homes they cannot even live in, or walk away from their homes penniless. The Federal government, off nation-building, ignores the financial burden to the Survivors of SuperStorm Sandy, providing little help filtering down to the people of America.

The media has hurt Sandy Survivors . They report that survivors are receiving lots of money from agencies, charities, donations. Most people have received a pathetic pittance: many nothing. The media spotlights a few individuals as enduring glaring hardship. The truth is, some people recovered quickly, because they used their bank accounts, erroneously believing they would be reimbursed. But most people are still living in substandard, hazardous conditions. Everyone is enduring glaring hardship. There is no help for Sandy Survivors!! Survivors need assistance, answers, results and resolution, now, when their children are breathing mold, sleeping in closets and eating ramen noodles off paper plates resting on cardboard boxes, standing up in back yards.

I remember the 1950’s, when there was a cycle of hurricanes in our area. At that time, we had a flood above the windows every two years. We were prepared. We understood our environment and weather patterns, and functioned within its perimeters. We helped each other. Neighborhoods came together.

During Sandy, no one warned communities in time. All the way up the coast, the media and officials told the public, the winds were only 75 mph. They didn’t warn of significant danger until the last few hours. We had so little time to prepare. The public was misled by officials. Officials and government were not prepared. Well into it, they could not even decide how to categorize this storm. The indecision and confusion of officials compromised the public’s ability to respond, react and protect themselves in the havoc.

Given the progressively emerging insurmountable barriers and negatives bombarding Sandy Survivors and persecuting the suffering middle-class homeless, I am second-guessing myself. A shrill voice inside of me scolds, “Who gave you the right to spend a year of your life like this? What were you thinking!”

My only defense is, I thought I could save my home. I thought it would be a month, maybe two. I believed hard work, government assistance, charity, support of community and country, were paths to success. After all, I lived through floods as a child. But that was a different time of community and official co-operative effort. I never imagined that when nature draws a line of demarcation, people do not cross it, and America only helps other countries in need, not her own people. We were all so naive.

When my house went down, my son said to me, “Bulldoze the house! Walk away! You cannot save it!”

I cried. I needed to fight for my home: otherwise, I would be a.victim, victim of a freak natural event. I did not know how to be a victim. I was a survivor of serious injury, cancer, and tragedy. Nothing could defeat me. My house was heavily insured. I paid off my house. I did not know how to be destitute. I did all the right things. I did not know how to surrender. I always won the battles.

Walking out of my stinking, gutted home recently, I said to my son, “You were right. I should have bulldozed the house.” When options deteriorate, choice narrows. Men lose hope: because hope is a bird whose wings fell off.

If I knew what I know now about the disaster recovery/restoration process, if asked to make a recommendation to another in this situation, without reservation, I would say, “Bulldoze the house. You have no idea how bad it can get, progressively, over time. Save yourself!!!”