A quick note from Libby—We have a special guest writer for Sick Note today: Beatrice Adler-Bolton, host of the excellent Death Panel podcast. I asked Beatrice to write about her experience getting Social Security Disability Insurance (SSDI), the paltry program that provides income to people who are too sick or disabled to work, due to her rare autoimmune disease. (As Beatrice will get into, that standard causes a lot of problems. And is evil.) It’s a story of complicated administrative tasks, denials, barriers, and plain old cruelty. I hope her story will help you understand just what we make disabled people go through in this country to receive barer-than-the-bare-minimum help. Beatrice has also recently been denied coverage of an infusion treatment she’s been receiving for over a decade, which helps her keep what remains of her vision.
I’m thrilled to be able to pay people like Beatrice to write for Sick Note about their experiences, and hope to do this more in the future. If you want to support my ability to do this, subscribe today.
Beatrice Adler-Bolton is the host of the Death Panel podcast, a show about the political economy of health, and the co-author of the forthcoming book, Health Communism (Verso 2022).
As of writing, I have been unable to “see good” for three years and two months. I first started experiencing unusual swelling in the glands of my throat and unexplained hearing loss in 2006. By 2009, when I was formally diagnosed, I had a slew of regular symptoms, from joint pain and swelling to peripheral neuropathy. I was perpetually exhausted, losing and gaining weight unexpectedly, having weekly migraines, constantly nauseous, and my hands were covered in angry red lesions. One day, my vision was just gone in my right eye. The visual loss was the symptom that finally led the doctors to figure out what was wrong.
I have chronic relapsing autoimmune inflammatory optic neuropathy (CRION) and granulomatosis with polyangiitis (GPA), which are what’s known as rare or orphan diseases. These conditions are too uncommon to know for sure why or how I got sick; we barely have a grasp on how they work in the body, so my care team calls it idiopathic, which basically means “of unknown origin”. The disease attacks the tissue that protects the nerves behind my eyes, which interrupts the signal from my eye to my brain, causing me to be, in effect, blind most of the time (among other unpleasant persistent symptoms). I am very sick—there was no question as to whether I was disabled—but the very nature of my disability became an issue from day one of the SSDI application process.
Administrative burdens—like bureaucracy, long wait-times for appointments, confusing paperwork, bad web portals, identification requirements, complex eligibility systems, redundant regulations, and more—arbitrarily block individuals from accessing programs which they need and are legally entitled to. The question of “do you qualify for SSDI?” is so much more complex than simply determining medical necessity. I know what it feels like to be someone that the system is intended to protect, who is simultaneously someone that the system is designed to try to weed out—particularly if you don’t easily fit into the categories that have been laid out to mark people for survival or death.
SSDI is rife with hoops and hurdles designed to alienate those who seek welfare and medical benefits, making it very clear to people who need this support that there is a high price that comes with access to any meager type of survival aid. As public policy scholars Pamela Herd and Donald Moynihan explain in their book, Administrative Burden: Policymaking by Other Means, “administrative burdens often disproportionately affect the disadvantaged who lack the resources to deal with the financial and psychological costs of navigating these obstacles.” Speaking from experience, the psychological and financial costs are extreme, and many people die or go bankrupt just waiting for their benefit determination hearing. I did not become a health policy nerd overnight; the application process of SSDI radicalized and transformed both me and my partner through our direct and intimate experiences with the logic of the Social Security Administration’s (SSA) administrative burdens.
Often, treating a rare disease is a little like the wild west of biologic medicine, and many of my treatments are extrapolated off protocols for conditions which behave similarly, like multiple sclerosis. When there are too few of you to meaningfully study, sometimes the best guess is as close to evidence-based as you can get. The direct management of my disease alone easily consumes a third of my life; it is a full-time job in and of itself to receive care. In 2018 I had 176 days of medical care, which is about five and a half months of the year. Medical care includes numerous doctors' appointments, two days a month for infusions of IVIG, weekly injections, several inpatient and outpatient visits to the hospital each year, appointments for blood work, imaging, apheresis procedures, outpatient surgical procedures, etc.
After an attack of optic neuritis that did not resolve with the intervention of steroids, I was still working as a freelance graphic designer, web designer and sales consultant. Earning between $1000 and $2500 a month, I was struggling to pay for my $1400 monthly COBRA health insurance premium, let alone the out-of-pocket patient costs and prescription co-pays. I decided to apply for SSDI because no matter what I did, I just kept getting sicker. The sicker I got, the less I could work, and the greater my medical debt grew and the more difficult my access to healthcare became.
Knowing an SSDI application can take several years, I got the process started as soon as I decided I needed to apply. After an initial phone appointment with an SSA agent, I spent the first dozen months or so doing endless paperwork. I completed dozens of financial disclosure forms, detailed descriptions of my work history; I filled out forms listing all of my job skills (even ones not relevant to any job I had previously held), and forms that asked for intimate and personal details about my Activities of Daily Living (ADL), e.g. my ability to feed, bathe, and clothe myself. There were several in-person evaluations with SSA doctors, where I was shuffled rapid-fire through a series of different clinicians, asking questions off their clipboards and barely looking at me.
With already a year gone by and nothing but paperwork submitted, I was suddenly running out of time. I made an appointment to go into a local SSA office because I wanted to see if I was eligible for expediting my application. I am dependent on my medications to keep my disease at bay, and since I was too sick to work a 9-to-5, I was piecing together freelance gigs and my COBRA insurance was quickly running out.
SSA offices are neglected places that are impossibly retro and structurally miserable. The waiting rooms are always crowded, and there is often a line in the morning to get in. It is heavily surveilled and policed; claimants are treated like criminals, and each phone has a detailed list taped to the back with instructions to navigate a bomb threat and/or hostage situation. When my number was finally called, I asked the agent about my options. She asked me a long series of questions about my life and disease. Unfortunately, there was nothing she could do to help my case along, and I could feel how awful it was for her to have to tell me that. “Call me back if you get the Big C,” she said, indicating that unless I was diagnosed out of the blue with some kind of cancer as a direct result of my treatments, there was nothing that could be done to speed my application even though I was quickly running out of healthcare.
Out of context that comment sounds crass, yet it is ultimately quite revealing of what the entire system is designed to do. The barriers to become eligible for an expedited application are austere. There are some dozen or so medical conditions which, if bad enough, may qualify for something called a “compassionate allowance,” (CAL) which is a list of diseases that are so severe that they are prioritized and fast tracked for approval. Alternately, if the circumstances of the claimant are such that they are in immediate danger, or their condition is terminal (TERI), there are a few narrow pathways to ease access to benefits. “Call me back when you get the Big C,” wasn’t a cruel joke; it was quite kind and sympathetic advice about what to do if my condition suddenly worsened.
A near-biblical text, colloquially called the Blue Book (actually called Disability Evaluation Under Social Security), rules over all of this categorical subtlety. Functionally, the Blue Book is a manual which lists specific criteria that qualify someone who has a disabling condition for SSDI benefits, and it contains various guidelines for prioritization. This text came to rule my life for the entire duration of the application because my specific diagnostic framing was (of course) not in the Blue Book. The United States healthcare system is so poorly designed to serve the needs of so many people, and it is especially ill-equipped to handle people like myself with rare diseases. To be considered an orphan disease, a diagnosis must meet a few criteria—namely that it is incredibly rare, the population affected by it is incredibly small, and the condition is not well understood or researched, often with no set treatment plan. It is unlikely that a rare disease will be listed, and while having a specific condition listed in the Blue Book does not guarantee that you will have a successful application for benefits, it does certainly make the process of applying much less fraught.
Most people who go through this process do so with the guidance of an attorney. Despite the fact that it’s a non-adversarial circumstance, representing yourself in a SSDI benefits determination hearing is not advisable. If you look at any website that offers tips on SSDI applications, in the FAQ there is always a question asking, “What if I prefer to represent myself?” Every single answer essentially just says, “Don’t.” When you are representing yourself, you are far less likely to get your application approved, and this can be one of the most significant administrative burdens in a bid for SSDI. The statistics can be staggering: one survey found that while there was a 60% approval rate for claimants with an attorney, the percentage of approvals for those self-representing sharply drops to nearly half, at a 34% approval rate. Since 2016, the SSA has introduced a pilot program where self-represented claimants receive coaching and assistance from staff lawyers, but I am unaware of its efficacy as little data has been released publicly and I did not personally get access to this in my own application.
In disability determinations, lawyers are not paid upfront by the applicant, but on contingency. If the application is successful, then the lawyer is entitled to a part of the beneficiary’s award. In other words, if they don’t win they don’t get paid. The idea behind this policy is to “democratize” the application process, preventing people from buying themselves top tier legal help and, in theory, gaining an unfair advantage at state benefits, healthcare, and support. Functionally, however, this attempt to keep things fair meant that no lawyer would take my case. Every lawyer I contacted said they were unable to commit because it “didn’t seem winnable,” and no one was willing to even try.
One of the reasons the lawyers thought I couldn’t win is because my disease isn’t in the aforementioned Blue Book. The second reason, which was often the deal breaker, was that I was still working. Even though I was working for extremely low amounts of money, had sporadic hours, and had exorbitant medical costs, it was too much of a risk that I would not win and they would not be paid. I felt trapped in a lose-lose contradiction: I was still working because I needed to continue to have health coverage. I couldn’t stop working because otherwise how would I pay my COBRA bills? My deductible? My monthly co-pays? This is what made me so fucking mad, because you’re faced with impossible choices. You want to say to everyone you encounter, what do you expect me to do? Just die? Go out and try and get sicker? Another SSA agent I spoke to during this years-long process had the brilliant suggestion that I simply “not work” for a few months. How do I feed myself? How do I pay rent? The SSA agent simply replied, “I don’t know.”
This is one of the most inhumane parts of the system, one that takes your care needs and your survival, abstracts them and then funnels them through a sterilized process of paperwork and court determinations. Without a lawyer to interpret your case, who has experience with the systems, forms and parameters, it’s incredibly difficult to demonstrate that you meet the requirements set forth in the Blue Book. Cases that might not be successful, and certainly require more work, are starved of the legal resources and support needed to navigate the process without overwhelming burdens being placed on the claimant. I was denied by 24 different law firms.
Every time, no matter how much I begged, pleaded, explained (or cried), I was told no. They never outright said I did not qualify—several lawyers even said I probably did, but the firms knew how much work it was and how much time it took to prove a case like mine. I was simply on the wrong side of a quite reasonable cost-benefit analysis.
This paradox of the “sick person so sick they must work for the healthcare despite the fact that they are too sick to work” highlights one of the key concepts of disability determination in this country. In America, the concept of disability from a structural, institutional and legal standpoint is entirely contingent on fitness for work. What this process is actually determining is not if an individual is sick and in need of help, but if an individual is not only medically incapable of work but clinically unable to be retrained for any other type of work. “Deservingness” for state fiscal support is evaluated by its own metric with regard to SSDI. Net income is not what matters but rather something called “substantial gainful activity,” otherwise known as SGA.
The Social Security Act requires a SSDI claimant to be unable to engage in what it calls substantial gainful activity. SGA is any wages generated by work, less medical expenses and less impairment related work expenses, that brings an individual’s monthly earnings over a specified dollar amount. The SGA for 2021 is $1,310 for non-blind disabled SSDI applicants, and $2,190 for blind SSDI applicants. If your monthly income (less impairment and medical expenses) is more than that figure, then the SSA considers you to be “able to engage in competitive employment," otherwise known as “not disabled.” In 2018, the year that my hearing was held, the SGA limit was $1,180 for non-blind disabled SSDI applicants.
At the time I did not yet qualify as legally blind, so this was the threshold I needed to be under. Ultimately, my adjusted income was well below the income limit for what constituted SGA in 2018 and it still would be in 2021. For example, in 2017 I earned an average of $2,000 per month and I spent an average of $1,138 per month on medical/impairment expenses, making my SGA adjusted monthly income $862 for the year before my certification. If I had gained all my income passively—even if I made upwards $10,000 a month, but worked no hours—I would not have been subject to this burden of proof. This means that if you work zero hours, yet receive passive income, like from the stock market, your income does not qualify as SGA.
On top of all this, to even qualify for SSDI an individual needs to have worked a certain number of hours and earned enough work credits. The work credits system is absolutely absurd and forces many people who were unable to work from a young age completely locked out of federal disability benefits for life. The credit is earned by working a certain amount of hours and/or earning a set minimum amount of income, up to four per year. For 2021, each credit corresponds to $1,470 in wages or self-employed income; to earn the full four credits in 2021, you must earn a minimum of $5,880. The number of credits needed to qualify for SSDI varies based on your age, but typically the minimum is 40 credits if you are over the age of 31, with half of those earned in the most recent ten years up until the year you are alleging your work-limiting disability. There are some exceptions for younger workers, but those exceptions, like the fast-track pathway I previously cited, are limited. If you are successful in your application and become certified disabled, your monthly SSDI payment will be based on a percentage of your prior income—yet another structural disadvantage that places undue burdens on lower-wage workers.
Worse yet, if my disease process had manifested only a few years earlier and made it impossible for me to have ever worked, I would have been ineligible for SSDI/Medicare and entirely dependent on Supplemental Security Income (SSI)/Medicaid. SSI is a state program, intended to provide either additional supplemental benefits on top of SSDI for low-income recipients, as well as benefits to disabled adults and children with limited resources and work history. SSI benefits alone do not make you eligible for medical coverage under Medicare, leaving recipients dependent on Medicaid for healthcare. SSI and Medicaid vary from state to state, and while life-saving, none are livable benefits. This leaves the shelter and care of the most vulnerable disabled people at the whim of state budgets and subject to each state’s social and religious norms.
There are so many ways that these vital survival benefits programs underserve and immiserate recipients. Yet there are even more ways in which systems of eligibility, like SSDI, discourage, alienate, and reject those most in need of support. There are certain types of work which are subject to increased discrimination due to the lack of work credit accrual, like domestic labor, unpaid care work, childcare, and some types of sex work. When I decided I needed to apply, I didn’t know what I was stepping into, and what I found was a horribly inequitable system which was ill-equipped to meet the needs of most of the disabled people I knew.
And when you win it, if you win it, the fight is not over.
If you are certified disabled, claimants receive a lump sum payment, of which a percentage typically goes to the lawyer as payment for the contingency. My disability judgment was made in January of 2019, and I was given back-payments through my “date of onset,” which was January 2017. The total sum of just under $23,000 went entirely to past medical debt, leaving me with $10,000 remaining medical debt, which I am still slowly working my way through. I wish I was joking. Furthermore, even though my disability application was backdated, I was still not yet eligible for Medicare coverage when I received my favorable determination. I had six months between the day I was declared disabled and when I regained my access to healthcare.
On average, 11% of SSDI recipients die before they gain access to Medicare coverage. This is one of the reasons why the two-year Medicare waiting period is most often known as the “death period.” Some people can become eligible for Medicaid benefits during this period, though individuals must keep their assets under $2,000 to maintain eligibility. This lump sum SSDI back-payment, like the one I got, can artificially exclude some from Medicaid benefits they are entitled to during the waiting period. Despite the fact that my certification did go back two years, there is a second additional waiting period of five months from initial onset to when an individual is eligible to receive benefits. This also means that even if a claimant’s application is approved swiftly, there is a five-month delay before they will receive support.
I faced an Administrative Law Judge again recently to try to prove that Medicare Part D must cover a drug I have been on for 10 years, but for which my condition is not listed under in the Medicare drug compendium. I am again, falling through cracks, not because I am not disabled enough but because my disease is too rare to be included or specifically named. The hearing did not go well. The judge ultimately determined that my Part D Plan was not only not obligated to cover the specific medication my doctor prescribed (Panzyga), but Cigna was free from payment obligations on the entire drug category. I will now be denied coverage of the vital medications I’ve been fighting for all of these years by Medicare itself.
I am continuing to appeal the decision and exploring all other options to access my medication, but the point is that an objectively sick person needs to maintain access to a drug that objectively works, and the system architecture has gotten in the way. The design of traditional Medicare is such that if I ever need long-term care—that won’t be covered. My experience with disability, both when I was on private health insurance and now on Medicare, is why I think we need a single payer system and so much more if we want to truly commit to the pursuit of health and protection of the vulnerable. Without this, we’re leaving people to die.