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?

Letter to FEMA on Denial of Reasonable Accommodation. 12-27-13

Federal Emergency Management Agency
Joint Field Office / Hurricane Sandy
Federal Coordinating Officer / Disaster Recovery Manager

RE: Reasonable Accommodation in Temporary Housing

December 27, 2013

Dear Federal Coordinating Officer:

As you are aware, FEMA stopped paying for my temporary housing, despite Stafford Act Protections for disabled individuals, on September 15, 2013, when they removed all able-bodied individuals from Hotels, ending the Temporary Housing Assistance Program.

As you know, xxxxxxx xxxxx, your predecessor, repeatedly committed to keeping me at this hotel, renting this room under a Direct Lease Program, if the TSA Program ended, until I could return home. I had personal conversations with Xxxxxxx and Xxxxx xxxxxx on this: he designated a “team” specifically to work on my case. They were the only FEMA allowed to speak with me: he removed all my personal information from the system. I was not contacted again until xxxxxxx xxxxx was leaving FEMA in June 2013 for a job with a different agency.

I am still in a hotel solely and exclusively because FEMA missed Substantial Damage in their Inspection of my house and gave me an unreasonable repair grant of $5,035 for my substantially damaged, and now toxic, house.

You have read my medical files, documenting medical limitations and hazards: why I require special options and consideration in housing. Let us be clear, my home accommodated all my needs: my home is not available to me now! I am adjudicated permanently totally disabled for 36 years and the grave implications of my unusual condition are voluminously documented. Despite this information, FEMA removed me from Temporary Housing Assistance at the Best Western Hotel: and, against my will, forced me to the DHAP/HUD Program. DHAP/HUD claims I am not their responsibility: I am FEMA’s responsibility, repeatedly refusing to help me in any way whatsoever. DHAP/HUD, like FEMA, is completely unprepared, unwilling and it would seem unable to deal with special needs, special circumstances, or disabled individuals: dismissing, denying, placing a whole class of people in terrifying jeopardy.

I filed two housing Appeals: to FEMA. The first was filed exactly as FEMA Agents told me to do, on 12-29-12. It has been posted on the internet since 2012 and repeatedly discussed with FEMA. An Appeal was filed by my attorney on August 22, 2013: a 504 Request for Reasonable Accommodation. Neither Appeal was answered. After assuring me the proper people were working on it for months, FEMA finally told me of the first appeal, “We do not answer Appeals. A non-answer was received on the 504 Appeal, saying if I attended DHAP Orientation FEMA “might” consider it. I did so. There has been no response from FEMA. However, I was told that FEMA flipped the 504 responsibility over to HUD. HUD is ignoring me.

BE Advised:

-FEMA has extensive medical documentation that it is hazardous to my health to relocate me to an apartment.
-I paid the hotel bill for the past seven weeks. I am out of money.
-The Rental Assistance/Transient Accommodations grant issued on 11-30-12, in the amount of $4,695.34 (which I tried to return to FEMA Agents at Cedar Creek Park 4 times and was rejected with. “We know you have related expenses. That is your money.”) Was exhausted on Temporary Housing. You have that documentation in your hands.
-I am participating in the BuyOut/Acquisition Program of NY Recreate. I was told several months ago that Resolution would take 2 to 6 months. I have no control of their timeline. The alternative to a BuyOut of my Substantially Damaged, Toxic house would be NY Rising Rebuild Program, which would be a hardship for me to begin after 14 months of futile repair attempts on a home that floated off its foundation and must now be bulldozed and elevated 12 feet.
-I was told by your legal department through Mr. Xxxxxxxx, by Xxxxx Xxxxx and Xxxxx Xxxxxxxxxxx, that there is $8,600 in my FEMA file (because you miscalculated repairs on my totaled house), available to me, that can be used for housing and has been provided to others for this purpose. I request this money to pay my Hotel bill now, committed to and implemented by Xxxxxxx Xxxxx and his Disability Team as Reasonable Accommodation from January until June of 2013, when he left FEMA for employment at a different Agency.
-I have sent Hotel receipts. I expect those bills (in excess of the initial $4,695.34 grant I exhausted at FEMA’s direction) to be reimbursed in a timely manner and my housing at the hotel to be paid from the $8600 withheld by FEMA on my totaled house, pending NY Recreate Buy Out.
-Note: Under the Stafford Act you are not supposed to charge the disabled person for temporary housing.

Please do not compound this horrific sequelae by again putting the blame on me, for still being in a hotel. I am here solely because FEMA failed to identify substantial damage, validate and deal with disability compliance, follow protocol, answer voluminous, properly directed complaints, or to act in a timely manner. I have been injured and scarred by FEMA’s lack of response. I am asking you now to demonstrate good faith: to cease and desist distributing outlandish letters with a litany of falsehoods to officials, falsehoods that can be expeditiously disproven. You have wasted so many people’s valuable time and effort with this frivolous, cavalier tactic. I am reluctant to believe that FEMA is that incompetent.

When we make grave mistakes, it is most facilitative to admit them and try to mitigate the consequences in an equitable solution. Without a doubt, FEMA, DHAP//HUD are making a mockery of disability and literally killing disabled people, because they don’t know what to do with us. I have seen too many of my disabled friends die because of the way they were treated in this disaster system. Don’t make my beneficiaries litigate this case!! Be assured that I have tried, and will continue to attempt, to settle this matter amicably.

Let us work together to rectify the devastating consequences that the Disaster systems have visited upon myself and the disabled community. Disabled people should have been the first population sent back home, not the last.

Sincerely,
Wendy Wagner

cc:
Senator Charles E. Schumer
Senator Kirsten Gillibrand
Senator Charles J. Fuschillo
Congressman Peter King
Congresswoman Carolyn McCarthy
Assemblyman Brian Curran
Assemblyman Harvey Weisenberg
Legislator David Denenberg

My Toxic House – Substantially Damaged. 11-29-13

My Toxic House: Substantially Damaged. 11-29-13

It is a location, a place where you belong. Where nobody can take your pictures off the wall. And when it is suddenly torn away by a vile and violent cyclone, and systems and people hammer at you that you do not belong, pull the blankets from under you as you sleep, you hold tight to the polluted soil of your own sweet land.

I sit on my land every day, by my home of 48 years where I raised my sons, now a gutted, toxic death-trap. I sit in my accessible van that no longer functions as it should, because it is packed tight with suitcases, winter blankets, food and living necessities. I cannot use the mechanisms of the access seat. It is blocked and impotent by the trauma of my life.

The land grows dark. I sit still in my van with my service dog Pollyanna in my arms, staring at a fading rock garden that I carried stone by stone from forests, beaches and mountain streams: now raped by looters stripping what is left of me. My face and blouse are soaked with tears flowing from eyes never dry these days. Pollyanna licks the salt away. Eventually, she tires, rests her silky head upon my sobbing breast, then slides onto her fleecy coverlet, exhausted from comforting the inconsolable.

It is so hard, impossible, to function: and it is impossible for able-bodied people to understand problems they have never experienced. But for me, it is my new, horrific, terrifying reality. It is beyond my comprehension that a life that was so manageable, is now so hideously out of control. I am thrust into a world where I am an alien, a freak: a world of systems and people that have no tolerance for difference, for pain, or those who use equipment. I am so lost: isolated. I walk through a dark, bleak, compassionless wasteland that is life post-Sandy, alone. I am alone!

My neighbors approach me, as I weep in my van, with, “Bulldoze the house and leave. You are bringing down our property values, because your house is still obviously storm-damaged. We want people to forget this neighborhood was flooded, so we can sell.”

It hurts to be dismissed.. But, I understand property values, and wanting to forget, to go on. Beyond that, I understand that I am a metaphor: a visible reminder that it can all be gone in a moment: your home, your health, your life. I hate that people now see me for my inadequacies. I was such a productive, appreciated person before Sandy: making unprecedented differences for disabled individuals. How fragile are our roles in life. How fickle is the cruel fist of fate.that turned a massive cyclone to my yard.

With my house, it did not happen all at once. It has been a slow process of loss, upon loss, culminating in my house sucking the breath from me and leaving me unconscious on the floor.

In the beginning, all the insurance adjusters who inspected my house said it was “totaled” by Hurricane Sandy. They were empathetic to the $50,000 loss of my accessible equipment and environment, but powerless. I had $300,000 in homeowners insurance: $100.000 contents. I only had $14,600 in flood insurance, because I did not live near the water and that was the policy my agent gave me. I received the flood insurance and $275 from the Homeowners Policy, for food spoilage and a front door bashed in by the wind. It was leveling.

In the disaster equation, if you had any flood insurance, it hurt you with FEMA. Survivors say that rather than being rewarded for doing the right thing, paying premiums: those of us who did, were “punished” and those who did not were reimbursed many times more, for the same loss. This was just the first of a litany of puzzling realities and inequities in the disaster repair/restoration marathon.

Initially, all estimates said it would cost over $100,000 to restore my house, before discovery of the foundation damage. FEMA never validated Substantial Damage to my house. FEMA inspected my house and gave me $5,000 for repairs. What could they be thinking!!

My house was now gutted, but there were still gross brown stains where feces spilled out of the toilet bowl, slithering through bedrooms and living room, and sewage bashed in the metal front door, splattering its imprint into my cement front porch. Mold crept deep into the walls, floors and floated visible in the acrid air. My house was initially sprayed for sewage and mold. It was declared safe. Six weeks later, a Mold Expert consulted, reported the house must be “Shocked,” then scrubbed down. Eight men cost me $4,000. He said it was the only way we could be sure the mold would not return. Afterwards, the house looked spotless.

In June I got the first indication that there was structural damage to my house. FEMA requested an inspection of my house by the Town: an inspection denied in November because Town inspectors said the house was “contaminated” and they could get “Hepatitis”. But in June, FEMA Program Directors claimed if the inspection revealed substantial damage, they could award me total: $31,900. Then, I would be allowed to apply for the Empire State $10,000 Grant. They assured me, “We accept a Building Department report over our own.” However, when it validated structural damage, foundation damage, FEMA declared, “You are not getting one penny more!”

White cottony puff-balls floated through my gutted house and clung to the walls. It was sprayed again for mold. In August, after further demolition of the walls and removal of objects and insulation from the attic suggested further contamination, the house was “Shocked” one last time and scrubbed, to death.

On September 20, 2013, I entered my gutted house, dreaming of holidays at home and pretty colors. How could I know a malevolent force had taken up residence in my personal space, and made my home a deathtrap. Insidiously, it overcame me, the polluted air. As I became increasingly dizzy, I did not notice my eyes swelling, my throat closing, until severe stomach pain doubled me over. Nausea and headache overwhelmed me. I could not breathe. My head, my face: the pain. I could not get a breath. Darkness slashed me to the ground as I passed out smothering in sweet yesterdays, gone bad.

For days I could not move my head, from excruciating pain in my face. I developed respiratory infection and rashes. Pollyanna woke up the next morning throwing up bile. She gasped and struggled for air all night. I sat outside my hotel room giving her oxygen and holding onto her life all that long dark night: I would not let her go. My doctor said, never go into that house again. It was terminal.

NY Rising, Governor Cuomo’s loan-to-grant Program touting restoration help for Sandy Survivors, sent me a letter offering a $145,000 Loan-to-Grant to “Elevate and Restore or Bulldoze and Rebuild” my house. I inquired, and like other homeowners, I was told it was not enough: it would cost at least $200,000. It is about $100,000 just to elevate the house. Also, the Program requires that the homeowner own and also live in the house for 3 years after receiving the loan, for it to become a grant. Many homeowners want to rebuild to recover equity in the house, and sell. The goal of this Program is to repopulate the land and revive devastated neighborhoods.

Now, I was being told that I had to elevate my house, repair it, and live in it for five years in order to forgive the debt, and that a ramp to that elevation would go around the whole house. Floodplain codes and costs for piecing my tattered house back together were making returning home increasingly impossible, for the lady in the wheelchair.

I told everyone I wanted a meeting with the Governor. There was a New York State BuyOut Program for totaled houses. But they were presently only considering clusters of houses and houses on the shore. Mine was neither. But, I felt my house qualified, except for the cluster and shore rules. And, I had observed that some Programs were being modified as time passed and justification became clearer. Then, after I passed out in my house, amazingly, I heard that they might be considering individual homes for BuyOut.

Be careful what you wish for! Considering a BuyOut is bittersweet, at best. In addition to the loss and trauma of the decision, the NY Rising Program airs commercials stating, “We are New Yorkers. We are stronger than the storm. Our communities are rising, better than before.” They make you feel like a loser because you are never going home: like you are giving up. In reality, there are few choices in this disaster equation: only best worst options.

NY Rising is a vendor-based Rebuild/Rehabilitate Program. That means, the State designates a fixed ceiling of money to be paid to contractors not homeowners, to restore your home to the same footprint, at basic quality, using new building and flood codes. The Program is faulted and disorganized: it is being designed in progress; rebuild allowances are unrealistically low; contractors are being paid in unfair increments, so many will not participate; and payment is extremely slow (Only 4 of 4,000 applicants have to date received any payment on their house.). It is a loan to grant program: the homeowner must own and live in the house for 3 (originally 5) years before it becomes a grant.

The BuyOut Program is called NY Recreate. NY State will purchase shoreline and high-risk houses at assessed value before the storm. This land is no longer habitable and may be used for parks. It was originally offered only to clusters of homes. Presently Buy Outs are only offered in Suffolk County. Recently certain individual “substantially damaged” homes are being considered for “Acquisition.”. The cash amount to a homeowner is low, but better than the un-repaired market value post-Sandy. The problem with this Program is that the “sale” price is not enough to replace the house with a similar house, in the same geographic area. Homeowners are devastated by the loss of place, often Long Island.

After 13 months of very intensive work, of being denied, and passed over by every program and charity, and putting $23,000 in repairs into my house, my house was overcome by chemicals and died a horrible death, leaving me stranded in the cold, cruel season of Good Will to All men: sitting on a building lot demolished by ax-slinging maniacs by mistake. When well-meaning people wish me a “Happy Holiday,” I wonder why they cannot see me bleeding.

NY Rising and NY Recreate require a Letter of Substantial Damage to proceed. This became my first clear definition of what was wrong with my house. Surely if I had this information when FEMA inspected my house, when they insisted that I put the heating system and electric in, I would have made different decisions.

“It was determined by inspection by the area building inspector that the floodwaters reached an average of five to six feet around and in the home. The water inundated the sub grade crawl space resulting in the entire building being shifted off the foundation and in some areas actually washing away the existing masonry blocks. The damage to the foundation and floor joists of the home has resulted in deflections many structural framing elements. The entire dwelling has shifted off the foundation. The Department of Building has therefore determined that the dwelling has been substantially damaged….”

I do not live on the water, or close to the water. But my house is slightly south of Merrick Road, on land that was once marshland. We never even got water in the street, unless leaves block the storm sewer: you rake them away, the water is gone. I would have been in my house, in my hospital bed that went on fire, with my service dog, if my sons had not nagged me out of the house. How vulnerable our decisions make us.

So there it is in black and white, on the day of SuperStorm Sandy, October 29, 2012, my house was fatally injured by a post-hurricane cyclone. I tried to breathe life back into her, but the diagnosis was wrong and she was too weak to survive the timeline of broken systems. On that day, my life was changed by the fickle fist of fate, forever!

Life post-Hurricane Sandy is a nightmare: of failed systems, apathy, toxic houses and substantially damaged people. No one cares about the agony of broken homeowners trying to stand brick on top of brick, in gunk. Everyone is broken in some way, limping through moldy cobwebs, gagging on sour milk. Priorities of programs and systems are gutted structures and paperwork, not people. Every day I wake to the stench of my life now, the reality that today will be worse than yesterday: as my body falls into irreversible loss, medical disaster, invisible to others. The reality of escalating loss is grounding, liberating, empowering.

People strive to regain some semblance of normalcy and financial stability in the horrific scenario called recovery – non-help, inequity. Process, procedure and outcomes shout down humanity. The weak are trampled. As we grow stronger, as the shock of Sandy trauma becomes our new reality, we understand we are our own best help. We are stronger than systems and cruel fate. Men climb up on the rubble of their land, are energized by their own autonomy, and wade through the sewage to the other side, conquerer: stronger, wiser, sadder than before.