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!

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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