THE BUREAUCRATIC HIT JOB
or
WHAT BROKE ME THIS YEAR
This post is publicly shareable and contains discussion of suicide.
The defining legacy of my year is the five months I spent appealing a discontinuation of my disability benefits. It was a life and death paperwork battle I just barely survived. It has been over since June and I am still debilitated.
I had very few words while it was happening. I have these, now.
I have received Supplemental Security Income (SSI) since 2018. SSI is a last-resort benefits program operated by the Social Security Administration (SSA) for disabled people who do not have sufficient work history to qualify for Social Security Disability Insurance (SSDI).
SSA conducts Continuing Disability Reviews (CDR) every three to five years to determine if beneficiaries still meet the impairment eligibility requirements.
All SSI eligibility processes involve mailed questionnaire packets. They arrive with no warning, are often more than ten pages, require handwritten responses to complicated and irrelevant questions, provide insufficient response space, and have very short deadlines for return.
They demand to know how each diagnosis listed specifically limits one’s ability to lift, squat, bend, stand, reach, walk, sit, kneel, climb stairs, concentrate, and use their hands. This question provides four lines for response.
My conditions fatigue the muscles in my hands and arms quickly. Any writing longer than my signature causes my hands to cramp and tremor. The section on medical providers and appointments only provides space for six entries. I see a dozen doctors in a good year. The additional response page at the back of the packet is unlined and supplemental pages are not accepted.
By the time I won my first SSI award I had completed over a dozen of these packets. They haunt me.
For people ensnared by bureaucratic agencies with this much control over their basic survival (such as in immigration, disability, and court systems) the arrival of agency mail can itself be a panic trigger. Disabled people in the United Kingdom created the term Brown Envelope Syndrome in reference to the characteristic brown envelopes used by the Department for Work and Pensions.
SSA uses white envelopes but the concept applies. Every sight of the SSA eagle logo in my mailbox raises my heart rate. Often it’s just general program information or notice of the calendar year rate changes. Sometimes it’s death threats. This is the death threat kind of story.
I received my first twenty page CDR packet in April 2021. The response took all of my strength and all of my time for three weeks. I did this instead of eating.
The CDR packet includes a waiver to allow providers to release medical records to SSA. Due to the limiting structure of how CDRs collect provider information, SSA only requested records from a few of my providers. Not all of those contacted released records.
In December 2021 I received a duplicate packet from the New York Office of Temporary and Disability Assistance (OTDA). While SSI is a federal program, SSA can delegate information gathering and disability determination tasks to state offices.
I now know that this packet came because of the lack of response from my providers to the initial CDR request, but there is no way to get that information out of SSA except in retrospect. The state packet asked similar but not identical questions, meaning I had to go back to my notes from the federal version but couldn’t simply copy answers over. This packet took a week and wrecked my hands for the month.
Under the authority of SSA, ODTA made the determination sometime in early 2022 that I no longer met the impairment criteria for SSI.
I found out late on the night of February 16th when I went for the mail and found a notice of benefit discontinuation.
“Your claim is being reviewed because we expected your health might improve. You said you have not returned to work. Your health has improved and you are able to work starting February 11, 2022.”
As if it were that easy.
I have survived the explosive impact this letter had on my life. I am surviving. And still, reading those words drags me to the edge of doom.
In addition to comprising my whole income, the SSI disability determination is the basis upon which I receive federally subsidized housing and internet, subsidized utilities, Medicaid, food assistance, and student loan dismissal. I have no other source for any of these resources. I am estranged from my family and have no local support.
With this letter I was forced into a fight for my life that depended on my ability to quickly and correctly parse a very strict and illegible system.
SSA timelines are a paradoxical cruelty. They move extremely slowly but we must move extremely quickly. The system has been so deeply neglected that basic administrative tasks take many follow up calls from beneficiaries across several months and even that is not a guarantee.
I have spent enough of my life listening to SSA hold music to know these failings well.
My eligibility for Medicaid is based on my status as an SSI beneficiary. As such I am not allowed to contact the Medicaid office directly. I have to wait for SSA to log account changes in their system and communicate them to Medicaid.
In 2018 my mailing address changed in May and again in September. I called SSA with both changes as soon as I had them. I made follow up calls at minimum weekly from May until the problem was resolved in January.
It took them three months to process the first address change and longer for the second. Because New York forces Medicaid patients into privatized managed care plans and each insurer only covers select counties, I lived in Orange County for four months with insurance that only covered providers in NYC. I had to drive two hours into the city to fill prescriptions.
This is the system that decides matters of life and death for some of the most vulnerable people in our society.
SSA frequently backdates communication. A document may be dated a full week before its postmark and two weeks before it reaches the recipient. An unexpected arrival with a return deadline of ten days, including postal delays, is a full sprint to answer.
My denial letter was dated February 11th. It contained incomplete, inaccurate information about appealing the decision including that I could request to receive conditional payments through the appeal process if I communicated my request within ten days.
I received the letter in the final hours of the 16th, halfway through that interval. The deadline was February 21st, on which the SSA office would be closed for Presidents’ Day. They would also be closing halfway through the workday on Friday the 18th and closed the 19th and 20th for the weekend.
I had one day from receiving the initial denial to have a formal payment request typed, printed, received by SSA, and processed into my file or I would lose my income entirely.
SSA uses incorrect, incomplete, and conflicting information to confuse vulnerable people into failing their traps. The appeal information attached to my denial letter listed a form I would need to submit and stated that I had sixty days from the denial date to submit that form.
The deadline is actually halved to thirty days if the individual is requesting continuing payments. I only learned this incidentally. After hours on the phone I was told by a different worker that the request for continuing payments can’t be processed unless the appeal form is attached or already on file, meaning the ten day deadline applies to both.
If they were any more competent, I’d think SSA is staging an elaborate scheme to evaluate whether it’s more difficult to get information into or out of the administration.
SSA field offices sometimes just trash documents sent to them via USPS unless they are sent in SSA-provided envelopes or by certified mail and with every page listing the individual’s social security number. I have had multiple hundred page packets of medical records fail to make it into my file via this method.
Faxes can’t totally be trusted, but if they are received during office hours and at least half an hour prior to closing, and you call the office directly after sending the fax and make a worker physically retrieve the document from the tray, they usually get filed.
The most reliable method is to bring documents in person because they get scanned while you are at the desk, but offices were closed at this time. Before the pandemic it regularly took six hours of sitting in a packed, loud waiting room to have one page scanned into my file.
An hour before close on the 17th I typed a letter including every identifying detail I could think of, filled in a notice of intent to appeal, and drove halfway to the Pennsylvania state line before I found a working fax machine. I sat in the parking lot on the phone with the field office until they clocked out. My letter hadn’t been scanned in yet but I was assured it had been logged as received and would count as under the ten day deadline.
I called back when they opened on the 22nd and kept calling for weeks.
Repeat calls are essential because the only way to get close to accurate information is in aggregate; case workers regularly give out information which contradicts other case workers in the same office and often make assurances that turn out to be false. I do not trust anything a single worker tells me and I trust information repeated by multiple workers only tentatively.
The SSA phone systems were significantly malfunctioning throughout spring 2022. Both the national call center and field office lines were commonly either not picking up, distorting so much that workers hung up, or dropping calls. Sometimes the field office never turns the phones on for the day.
When I was able to get through I was told by many workers in daily calls through the rest of February and March that my request for continuing payments was received and that I would be paid. It was received. I would not be paid, as it turns out.
There is literally nothing more I could have done in February or March to ensure I would be paid as requested. The paradoxical timelines are integral to the stress - I had a single day to complete my work but it took over a month of calls in order to confirm that they’d scanned in a single piece of paper.
Along with my appeal I submitted a request for a copy of my medical file - an opportunity to see what medical information SSA had received from my providers prior to finding me not disabled. This file is a crucial step to any appeal and yet only one of dozens of workers informed me the ability existed, and only after I’d explicitly asked.
Also, this request takes months to process and people are allowed to make this request only once ever.
In February one worker told me I just needed to write down my request for this file and fax it. In March another told me it would be denied unless I submitted a specific SSA form. I submitted that too, and in April got yelled at by a different worker for wasting resources with a duplicate request.
But I got the file, which looks like a cross between a terror threat level chart and the world’s worst pride flag. I was able to see which providers had been contacted for records, who had submitted them, and what had been decided by the worker’s comp doctor I had to see for SSA’s in-person medical evaluation. That doctor called me “a well-developed, obese female, who was unaccompanied” but on the whole did agree I am significantly impaired.
Once I received my file and learned which medical records they had considered in the initial decision, I had a very short and indefinite window to acquire, process, and submit all the records they had not received. In one week in April I completed and submitted nine release of records requests to seven hospital systems covering care by thirty-two providers at twenty-seven office locations.
The work was with dual purpose. First: collate the specific records I thought would be most effective evidence if my case progressed to the hearing and court stages. Second: bury SSA in as much paper as possible to increase the likelihood they would reverse the fit to work assessment based on totality of evidence. I processed, read, and sorted thousands of pages of records to build my hearing argument.
Both the time pressure and the ill-defined deadline are classic SSA tactics. Because it was OTDA who made the initial fit to work assessment on behalf of SSA, the reconsideration stage of appeal involves the case being handed back to OTDA for review. The accompanying documents I needed had to be sent to SSA who would, at some future date they couldn’t specify, send on whatever they had received. I was not allowed to contact OTDA directly about my case.
Medical records departments work slowly. SSA works slowly. Rural internet works slowly. USPS works slowly. My brain and body work slowly. I had to drop everything and devote every waking second so that as much of my medical record as possible would get to the SSA field office and be processed into my file before the deadline which could have been literally any day in a months-long timeframe.
The discontinuation of my SSI benefits took effect in May. Although the denial letter incorrectly stated which payment would be my last. May was my first month as a conditional payee rather than a full beneficiary.
May 2022 payments disbursed on Friday, April 29th. I received no payment that day. I had no recourse until offices opened on Monday May 2nd, at which point the payment would be three days late and I would be behind on rent.
I spent that weekend refreshing my bank app and thinking of nothing but death.
My stress levels had been toxic and rising for three months. I wondered daily whether the process would end with my victory or my suicide. But once I had been repeatedly told my request for continuing payment was received, I did not think the end was so imminently near. I had just been through my file which clearly included the continuing payment request with processing stamps from the field office showing it was received before the deadline.
I called the national number when they opened at 8:00. They hadn’t turned the phones on for the week. I called the field office when they opened at 9:00. Somehow they received and processed the request but never added me to a payment list. The worker told me to type and fax the letter again, give them one to three weeks to receive it, and then call about getting paid.
When I brought up the very relevant facts of a) it was their own fault and b) rent was due yesterday, he called me too emotional and hung up. I called back and got a worker who repeated the same thing and told me I could only get a stat payment or speak to a manager if I could bring proof of eviction proceedings to the office.
My housing situation is not stable. When I was homeless in 2018 and applied to every subsidized housing program I could find (including programs in every single county of New York) this was the single unit I was offered. And even then I only got it because I was allowed to jump a years-long waitlist by being a wheelchair user.
I work so hard at staying in the good graces of my housing provider because this is literally all I have. I will not be homeless for a third time. There is no life if I lose this place. Things would not need to progress to formal eviction proceedings before they killed me.
The worker kept saying it was my choice to be polite and fax the letter again or to get emotional and call it an emergency unnecessarily.
I only survived this day because SSA field offices had recently reopened for in person business. I printed the page out of my copy of the file showing they had received the letter in February, grabbed my fifty page federal lease, and drove an hour there. It’s harder to physically ignore a person in front of you than it is to hang up on someone for crying.
I was able to successfully prove the mistake was their fault and get onto the payment list but they still couldn’t hand me a check without eviction papers. I had to wait on direct deposit and hope that it would come through before I was charged a late fee on rent.
It did, but that week was the tipping point into burnout I still haven’t recovered from. That level of existential stress fundamentally changes a person, and I will never not remember the way my brain marinated in the fear of that moment.
Those five months were the most I have thought about dying since the last time I tried to.
There are four possible stages at which to appeal a disability determination. The first is to request a reconsideration from the office which issued the initial decision. The fourth and final appeal stage involves suing SSA.
Bluntly, I knew immediately upon opening my denial letter in February that if I fought all the way to court and still lost, I would make no attempt to live through it.
This was the first time I considered lethal means in over a decade. Every day for five months I thought about the fact that I had a plan. I didn’t want to act on it. It was only ever a plan of last resort. But once I’d made it, I couldn’t ignore it.
It is difficult even now to say publicly, and to so many people who have directly kept me alive through past struggles, how prepared I was to end my life if I exhausted my ability to appeal.
The five months my appeal was in process were the most acutely stressful of my life. The memories are an emotional blur. In equal parts: the depressive urge to give up, the anxious urge to run, the terrified urge to avoid sleep and ignore the finite limits of my body. The phrase ‘you are able to work’ haunted me. I had panic attacks nearly every night. I cried so much my eyelids chapped from the salt. My heart rate was dangerously high all the time.
The stress exacerbated all of my symptoms and the time I spent working on my appeal was time I wasn’t working on keeping myself alive. My hands cramped and shook from the paperwork. My arms suffered so much from the writing and typing stress that it was difficult to transfer in and out of my wheelchair. I developed a new musculoskeletal problem that made sitting in my wheelchair, and eventually sitting at all, extremely painful.
I set myself a rule in February that I would take on no other projects - medical, administrative, or hobby - until the appeal was done. By March I was in such excruciating pain for so much of the day that I broke that rule and started the process to be fitted for a new wheelchair cushion. The bulk of my appeal paperwork, calls, and medical record processing was done from bed, in intense pain, or while sitting on ice to fully numb my legs.
The notice in June that my appeal had been successful was an immense relief. I would not need to spend my summer suing the federal government. I was so broken by then that I could not engage emotionally with what I had survived.
For the entirety of the appeal I knew I was on the cliff edge. I knew this fight was life-or-death and that every tiny detail could be lethal. I knew the strength behind the process the government was using to save money by killing me.
I am recognizing now as I begin to process the experience that while I survived, the wounds I escaped with are extensive and they are deep. Some of this is damage I can work through. But I know some of it is permanent. I have been fundamentally changed by this.
In the weeks that I have been thinking about how to describe this experience I have been thrown back into the emotions of the spring so completely that I have to remind myself daily it is actually over. I dug up the victory letter to prove I hadn’t imagined it.
My heart rate has been elevated since the moment I first began to organize my thoughts and keeps spiking dangerously high while I sit still and write. The panic attacks in my sleep are back. I am shaky, distracted, and on edge constantly. I needed to write these words, if only to get them out of my head.
I had to work harder in order to prove I’m too sick to work than I ever have as an employee. If I were capable of supporting myself via employment I would be doing so. No one enters, endures, or survives the hell of fit to work assessments because it’s the easier way to get paid.
The misconception of chronically ill people as lazy and entitled is completely at odds with the reality of our lives. Forced poverty is not luxurious. I live alone in the woods on $800 per month. My social life at this stage of the pandemic consists of a library card and a dying laptop.
The entwined tropes of disabled people as societal burdens and fear-mongering about fraudulent benefits-seekers are timeless and kept alive by capitalist systems.
Hatred of and discrimination against disabled people are everywhere. It is particularly disappointing to see ableist perspectives about non-working people perpetuated by those who are otherwise progressive and anti-capitalist. When occupational history is used to communicate someone is more deserving of basic rights or when non-working people are called grifters for survival crowd-funding, the capitalist metric behind fit to work assessments grows stronger.
Capitalism does not endow worthiness. There are no undeserving poor. My life is worthy because I am living it. I am no more worthy for having a work history or less worthy for being unable to work now. It does not benefit society to have subjected me to all this scrutiny to prove I’m really sick. It does not benefit me that others will be excluded from benefits programs in which I have been included.
I have previously ascribed my bureaucratic survival to luck, as forms of privilege do factor in all points of these decision trees. Here it feels insufficient relative to the number of times I would have failed if not for my own precise and unrelenting work. I survived because I knew from the first minute it would take a mountain of intricate effort. I survived because I knew not to trust SSA communication.
Because I knew each of their many potential points of administrative failure. Because I knew I had no chance unless I prioritized this fight over my short and long term health. Because I was willing to destroy my body in the process. I succeeded this time because I have failed before.
The biggest threat to my life in 2022 was not the third year of plague, the medical equipment safety recalls, the violence of poverty, or the genetic mutation disintegrating my body. It was the governmental assertion that I am healthy enough to maintain a career. Or die trying.
I have these words. And none more.
