For a Brooklyn Woman with ALS, Social Security is Elusive

Hi, friends. There are, like, eight other posts that I’ve been drafting, but this is a way more pressing matter. It is a call to action and a call for help.

I mentioned in my last post that I started to assist a woman named Flora who has ALS. I knew when I signed on that I would be helping her, not as a caretaker, but with administrative tasks. Emails, finding gifts for family and friends, organizing her bills as they come in, that sort of thing.

I was also aware that Flora had hired a lawyer to help her in her fight to receive Social Security Disability benefits. One she had been fighting since October 2014, six months after she had to leave her job at Warner Brothers because she could no longer work. (If you didn’t know, that’s how Disability works–you have to be out 6 months before you qualify to receive anything.)

I started working with her in February. It’s May, and she still hasn’t received a penny of her benefits.

On March 26, I went to the Social Security Office on Flora’s behalf to file the next round of documents needed to secure her benefits. As is the norm at any government office, you could write a play based on the shit that goes down in those waiting rooms, so I’ll spare the details. The woman who I met with, after a 2-hour wait, was very nice and apologized that it had already taken so long for Flora to get her benefits. She told me that everything looked good, but at some point Flora should update her citizenship status. She became a citizen 11 years ago, and it wasn’t in their system. (All this despite the fact that she has a U.S. Passport, which they copied in my presence, and should automatically prove her citizenship.) The woman assured me that this detail wouldn’t negatively effect Flora’s reception of Disability and happily promised that she’d get her benefits in 30 days.

The next week, we got a letter which stated that she would be awarded benefits of x amount, and that because she didn’t meet citizenship requirements she wouldn’t be receiving benefits. You didn’t read that last sentence wrong. Mixed message much?

I called the SS Office for Flora, was on hold for 30 minutes and the system hung up on me. Called back, waited for 25 minutes, spoke with someone and explained the situation, asking for clarification about the wording of the letter. Yes, we would have to go back in with proper documentation proving her citizenship, we couldn’t make an appointment and it would be best if Flora could come herself to answer questions they might have. Let me reiterate. Flora has ALS. Since I’ve met her, her condition has been in a fairly steady decline. When I met her, she could walk slowly around her apartment without assistance. Now she can barely shuffle to the bathroom and can do so only with help. There is no way she could get from her third floor walk up to the Social Security Office. She shouldn’t have to. It’s called “Disability” for a reason.

I asked if the woman I was speaking with could tell me what questions they might have for Flora so we could be prepared. I was on hold for five more minutes before the call was dropped. Accident? I’m gonna go with the benefit of the doubt. I’ve accidentally hung up on people before. But it felt like we had even less information after that call than what we started with.

We decided that I would go back to the Social Security Office on April 9 with proof of her citizenship: passport (again), naturalization certificate, the confusing letter that we received, and, of course, a notarized letter from Flora giving me authorization to act on her behalf. After another two hour wait, the gentleman (I use that phrase, um… loosely) behind the glass told me he needed Flora’s verbal permission to access her case. I’ll say it again: Flora has ALS. She is literally still talking with help from a medication that costs $700 to fill without insurance, and she’s going out of pocket. What would we do if she couldn’t speak that day?

He was excited to speak with Flora, born in what is now the Ukraine, because, he told me, he could speak Russian. I responded that she’s been here for over 20 years and speaks perfect English. He called her and ended their conversation–by that I mean asking her name and date of birth–with some sort of statement to her in Russian. Which, if I recall correctly, caused her to respond with something like, “Go fuck yourself.” (I found that out when I saw her the next week. Her impression of the situation was that it was a bullshit call, made by the agent so that he could show off his “skills.” Given the rest of my conversation with this fellow, I would say she’s on the right track. Did I mention she curses more than I do??! [I love her!!])

When he got off the phone, he told me that I didn’t need to come in. Everything was already being processed. I sat for a moment flabbergasted. I asked him to pull up the letter that we got (they’ve got access on their computers to all the case files) and explain to me what we were misreading that led us to believe a visit was necessary. He said that the letters, “Have to be nasty, or else people don’t come in.” I told him, that, well, according to him I didn’t have to come in, so it still didn’t make sense. I asked why the woman on the phone would have given me wrong information. He said that they get so many calls that they have to get through that she just didn’t take the time to look.


But wouldn’t providing accurate information from the get-go mean less work and wasted time and greater efficiency and less overall aggravation?

I had to ask him several times, “So, you’re sure there’s no further action required from us to get this to go through for Flora?” before he said he would enter the naturalization information into the system. An action which took seconds. Then he took issue with my wording, something that I said about Flora receiving her benefits, and snapped back that they weren’t doing her favors. She would be getting the money she deserves because it’s hers. It wasn’t a privilege. She needed it and she would get it.

I was a little surprised and felt like I was being scolded. I wanted to tell him, “Don’t you think I know that? How dare your agency waste her time and the money that’s not coming in, which she is paying me to deal with your bullshit. How dare you think that you need to tell me what time it is.” Instead, I thanked him profusely (I mean… would YOU want to work at the Social Security Office!?) and inquired once more if it would truly be another 30 days until Flora got her benefits. He assured me it would be.

Jump to May 7. No word from Social Security. Since Flora is totally on it, she asked if I would call her lawyers. She had gotten a call from them asking, again, about her citizenship status with Social Security. We assured them that we brought the proper documentation on April 9. They called Social Security for Flora with that information and told us that the timeline the Social Security agents gave us was completely wrong. That her application with her citizenship information could take 30-45 days just to be “received” by the Payment Center in Baltimore, and then an additional 30-45 days to actually be processed.

I asked if they had any guidance for next steps. The lawyer asked, “Is she in dire need?” I said, “Yes, it’s dire, she has ALS.” I now know that “Dire Need” in Social Security lawyer-speak means not having money for food or medical care, and getting evicted from your home. Well, she’s paying for those things with help from her boyfriend, mom and a fundraiser that you can link to here. The lawyers went on to say that it wasn’t uncommon for the process to take 90 days, and could be 120 days before she saw a penny of the back payments she’s been due since October.

Flora, in her quiet, sing-song voice said simply, “I don’t know if I have 120 days.”

We agreed, with the lawyer’s advice, to wait two weeks and see what happened. On Monday, I called Social Security and an automated voice told me that the wait time would be 50 minutes and they would call us back. We called her lawyer who said she would call the Payment Center on Flora’s behalf. We played phone tag until today–Thursday, May 21–when the lawyer told me that Flora’s case still hadn’t been assigned. So, no person in the Payment Center has even looked at her case in the 42 days since we made sure that they had the accurate information.

Then I had to tell Flora. So, I cried.

And as I’m writing this now, I’m still crying. It seems quite clear to me that the System of Social Security is built to make getting the money people have been paying their whole lives to get back in their final years so hard that they just give up. How hard must this be for people who have begun to lose their mental capabilities due to old age or mental illness? For people with poor reading comprehension or who do not speak English? For people who are literally sick and tired and don’t have any more fight in them? For people who do not have a support network or friends and family willing and wanting to be an advocate?

The level and amount of misinformation that is routinely shoveled out of the Social Security Office is astounding. How ’bout this: Just don’t make promises you can’t keep. Don’t give false timelines. Don’t do it. Don’t fucking do it. One of the first rules you learn in service, say a restaurant host job or in retail, is that you should always tell guests that the wait time will be longer so that they are pleasantly surprised when their service comes sooner.

Well, in this case, we aren’t talking about brunch or a thing to buy to put your things in. We are talking about making the standard of living the best that it can be for people who have paid their dues and need help. I get that there are a whooooole lot of people who need help, but the lack of efficiency we are talking about here is seriously next-level, and I can’t imagine that Flora is alone in this treatment. The Social Security Administration should be ashamed. As should our government. I can only imagine that lack of adequate funding is partially responsible for this entire mess.

And with that, I’m at a loss for words.

What I can say is that Flora is handling all of this with so much grace and humor. I only hope that I can muster half of her courage and resignation when and if I reach a point that I know that my days are limited. In another three weeks we will be “allowed” to call Social Security again to check up on the status of her benefits. I’m not really the praying type, but I hope and pray that we’ll have good news before then.

In the meantime, if you are moved by this story and would like to contribute to Flora’s fundraiser, you can do so here.

I thank you from the bottom of my heart. I know Flora does too.

Music for this one inspired by the Foo Fighters on David Letterman’s last show. Seems apropos.

4 responses to “For a Brooklyn Woman with ALS, Social Security is Elusive

  1. Pingback: status games | apples & azaleas·

  2. hi! I´m here reading your story, through the update in the fundraising link, I’m thankful for this update and so sadness by this, I can´t believe the kind of shit the security system pulls.
    please tell Flora I´m Mech, she will know, that I love her, me and my family love her.

  3. Pingback: thanksgiving | APPLES&AZALEAS·

  4. Pingback: 1,089 people have been killed by police since January: A Polemic | APPLES&AZALEAS·

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