Boston, United States – In 2015, I fell 25 feet (7.6 metres) from a Redwood tree and was in a coma for 10 days.
I spent the rest of that year using an arm crutch and went through four months of outpatient rehabilitation. Nine months later, I had eye muscle surgery to correct double vision that resulted from damage to my occipital lobe.
Five years later, I still suffer from fine motor deficits, balance issues, and have trouble with my memory and speech.
My first application for Social Security Disability Insurance (SSDI) – a government grant which provides health insurance and a monthly allotment of money for people with disabilities to live on – was filled out on my behalf by my parents.
I have no recollection of it and my short-term memory is still impaired.
I do recall the Social Security Administration (SSA) scheduling an initial assessment with a neuropsychologist – a full-time real estate agent who saw patients on the side – in 2015. He met with me in his tiny real estate office located in a business park with no medical facilities nearby. This was my first warning sign that the SSA’s disability operation was not what it should be.
Navigating the SSA’s disability process has never been easy, but if President Donald Trump is re-elected, many believe it is only going to get harder. His budget has already proposed cutting about $505bn from Medicare over the next decade and $35bn from SSDI and Supplemental Security Income (SSI), according to the Committee for a Responsible Federal Budget. (Democratic nominee Joe Biden has said he will not cut Social Security funding, although his voting record shows he has voted both for and against protecting Social Security over the course of his Senate career.)
This could leave an already poor and under-served population even more destitute than they already are.
“His proposed cuts to Social Security, Medicare, food-assistance programmes and more will only hurt those who are already struggling,” Congressman John Larson told CNBC in February. “The president should live up to his promise [not to touch Social Security], instead of breaking it.”
About 75 percent of US workers live pay cheque to pay cheque, according to the CareerBuilder website. For people who are hurt or ill, the SSDI is imperative for them to support themselves and their families.
Most people assume applying for SSDI is a process they will never have to go through. But according to the Centers for Diseases Control and Prevention (CDC), the reality is that one in four US citizens live with a disability – cognitive disabilities being most common in younger people and physical disabilities in older people.
And as I personally discovered five years ago, everyone is one accident – one fluke – away from becoming disabled or chronically ill and unable to support themselves.
Rushed decisions, inaccurate data
In late 2018, after I moved from San Diego to Boston, the SSA sent a thick stack of documents to my parents’ address in San Diego to check up on my deficits and make sure I had not magically become able-bodied.
When the packet arrived it was already 10 days past the submission deadline. My parents forwarded it to Boston by mail, and it was three weeks late by the time I finally saw it in February 2019.
I wondered if the SSA had even bothered to read my file. Not only did they send my mail to the wrong address, it was a printed packet to be filled out by hand. Because of fine motor impairment caused by my traumatic brain injury, I cannot write by hand. This was noted in my file which they either failed to consult or ignored. Had I received the packet in time, I still would have had to take a day off work and wait in the office for an SSA employee to help me.
Instead, the SSA decided to deny me benefits based on the only medical records of mine they obtained: those of my psychiatrist – not my primary care physician nor my neurologist.
But making rushed decisions based on insufficient or inaccurate data is not an anomaly for the SSA.
Rebecca Blanton, a former executive director of a state agency, who says she “had done everything right”, found herself at the mercy of the SSA’s whims from 2015 until the end of 2019. Even though she had been diagnosed with lupus, fibromyalgia and severe arthritis, and worked with a disability lawyer, Blanton’s application was denied multiple times by Social Security – but she continued to appeal.
“You should be ready for them to call you at any point to go into evaluations from a state physician,” Blanton says, describing the appeal process. She was told she would only be given “one to two days” notice to appear in-office, an impossibility for Blanton who cannot drive and needed to arrange for transportation.
But before she was able to see a Social Security physician, her application was denied based on a different physician’s notes – notes from a visit that had never happened.
“I had never seen that doctor,” Blanton explains. “I hadn’t released paperwork to that doctor. They were just in the network of doctors that my [insurance] plan took. I had never been evaluated by them.”
Like Blanton, I filed an appeal immediately after receiving a denial letter in early 2019 and desperately sent requests to Tufts Hospital in Boston to release my records to Social Security. When Tufts finally released my medical records, the SSA determined I still needed an in-office neuropsychology evaluation performed by one of their psychologists.
Not only does the SSA expect disabled applicants to cater to its scheduling, it expects applicants to have transportation readily available.
Don Roberts, a certified SSI/SSDI Outreach, Access and Recovery (SOAR) navigator, helps individuals negotiate the process of applying for disability insurance. “The process for getting approved for Social Security Disability involves several interactions with Social Security and/or their doctors after the initial application is filed,” he says. “People who are disabled, in general, have difficulty following the procedure.”
A notable example is Lorraine Traylor’s, whose appeal hearing was scheduled in an entirely different state. In February 2016, Traylor, then 50, applied for disability following a traumatic brain injury she sustained while working as a paramedic the year before. The ambulance she was treating a cardiac patient in was hit by another vehicle on the freeway.
Traylor and her lawyer appealed multiple times before securing a court hearing in Cincinnati, Ohio – a decision the SSA made even though she was a resident of Kentucky. After her court hearing, Traylor was approved for disability in 2019 – three years after her initial application.
“It’s an incredible relief when it comes through,” Blanton says. “But I know so many people who’ve gone through similar fights, to be rejected at the end.”
That is exactly what happened to Kody, who only wanted his first name disclosed, when he was denied disability insurance in 2012, 2013 and again in 2015 after being diagnosed HIV-positive. The second and third appeal included psychiatric evaluations with SSA doctors but no physical examinations. His final appeal culminated in a court hearing with a judge in Dallas, Texas who has a more than 50 percent denial rate.
Similarly, in 2014, Angie Ebba, 39, found herself attending three different court hearings as her judge requested more and more medical witnesses.
She was also going through a divorce at the time and says: “One of the questions that the judge asked me during my first court appearance was if my spouse had left me because I was disabled.”
“I was kind of shocked but answered the best I could – that while it wasn’t everything, it did contribute to the issues we had.”
Not all of the available support systems are as reliable as SOAR – or even state approved. After Blanton’s lawyer misfiled some of her documents, she filed a complaint with the state bar, and subsequently discovered her lawyer was not licensed in California – the state he was practising in on her behalf.
“He’s licensed in Washington State,” Blanton says. “He has multiple complaints against him [there], which is why he came to California – California allows lawyers, as long as they haven’t been disbarred, to practise without any specialty or knowledge of disability – and there’s no way to really prosecute them if they fail on the job.”
For those who do make it through the appeal process, the onslaught of paperwork and consistent monitoring does not end. The SSA is hypervigilant for any type of fraud – often to the detriment of the people they are purportedly helping.
When told by an SSA employee that they had to be wary of scams, Blanton replied, “I was making $100,000 a year at a government career. I literally was meeting with the Obama administration on policy work. And you’re thinking I’m gonna scam this for less than $2,000 a month? Really?”
“The last thing I wanted to do was lose my job,” Traylor says of her career as a paramedic.
Traylor continued to work for the year following her injury despite her inability to “remember where [she] was going or what [she] was doing”. Her coworkers noticed the change but did not want to hurt her feelings by mentioning it.
“I made good money – I made very good money. I loved my job,” she explains. “And there was no way I was going to give up a $75,000 a year job [when I was a paramedic] for $2,000 a month from disability. Why would I do that?”
Below poverty level
Many of the people receiving SSDI would like to return to work – but do not want to lose the health insurance they receive along with the monetary benefits. In the US, health insurance is secured via employment but many jobs do not offer health insurance until after a 90-day probationary period has passed. The SSA claims to aid disability recipients in this return to work via its “Ticket to Work” initiative, but the programme proves better in theory than practice.
After complications arose from the Harrington rods implanted to help in the treatment of her spinal deformity, Lenisha Brown applied for disability in 2008 with the help of a disability lawyer. But to qualify financially, Brown needed to “essentially ruin [my] credit. You can’t have savings. You can’t have assets.”
When Brown realised she was only allowed to have $2,000 worth of income, including her SSDI benefits, per month – below the poverty level – she wanted to find a way to re-enter the workforce. By signing up for the “Ticket to Work” programme, Brown thought she would be able to earn above her cap until she had some money saved.
Unfortunately, “Ticket to Work” does not account for those too disabled to work steady jobs. Brown began freelance writing, but a freelancer’s income changes from month to month and securing health insurance through an employer is impossible.
“The issue is that they have no way to track freelance work,” Brown explains. “If they see that I made $3,000 one month, then they count it as ‘I make $3,000 per month’ [even if] I didn’t make anything the next month because I was sick.”
After only eight months in “Ticket to Work,” Brown’s disability benefits were terminated, as well as her Medicare, leaving her with no health insurance.
The “Ticket to Work” programme ignores people like Brown or myself, incapable of re-entering the traditional 9 to 5 work environment. But even those who would benefit from such a programme are not given the necessary information or guidance to take advantage of it.
‘Agencies have to talk to each other’
Ryan, 34, who asked to only be known by his first name due to his ongoing situation with the SSA, was such an individual.
With his parents’ help, Ryan, a wheelchair user, originally applied and was approved for SSDI when he first enrolled in college in 2004 at the age of 18. Every so often, he had phone calls with the SSA to check in on his disabled status, which were inconvenient but standard protocol. The real issues began after he finished graduate school.
After securing his first job post-school, Ryan updated his income with his local SSA office, but the cheques kept coming.
“I didn’t understand the whole ‘means-tested‘ portion at all – none of that was explained to me – so I just kind of thought there was some reason I still qualified,” Ryan says.
After digging into it further, of his own volition, Ryan informed the SSA that they had been overpaying him. In response, the SSA terminated his benefits and requested repayment of an unconscionable amount of money for Ryan – roughly $10,000.
“I had filed taxes here before,” Ryan says. “My young brain was like, ‘All these agencies have to talk to each other’.”
At first, Ryan and a friend attempted to appeal as the error was not Ryan’s fault. Since the SSA failed to perform its function and ignored pertinent information, surely the responsibility for the mistake was theirs. But that is not how the SSA operates.
“I ended up having a friend of mine – who wasn’t actually a lawyer – [go] down with me to their office,” Ryan explains. “[He] got me on a payment plan after all of the appeals.”
Despite notifying them of his employment and filing the associated taxes for being employed, the SSA failed to acknowledge what Ryan had reported. Although Ryan still is repaying Social Security, the error worked in his favour when it came to health insurance.
Because Medicare (SSDI) is inextricable from the monetary component of SSA’s healthcare insurance, Ryan would have been without insurance while he waited to secure health insurance from his employer. If everything had been handled correctly by the SSA, he would have been a disabled person without health insurance during his probationary period.
The power of privilege
With all of these horror stories, many wonder whether the process to secure Social Security Disability Insurance can ever be easy? The answer is a tentative “yes” – if you have the right amount of privilege or connections.
Becky Meyers worked as a lawyer before she had a series of strokes and open-heart surgery. Her employer had a generous disability plan in place following another employee’s stroke a few years earlier. The policy allowed the insurer to subcontract to a company whose sole occupation was filling out and filing SSDI applications.
“There is no human way, left to my own devices, I would have been able to pull the documents together,” Meyers says. “My story … is a story of how privilege makes everything different in this world.”
Because Meyer’s condition was thought to be stress-induced, had she been forced to undergo the standard Social Security process without any help, she feels the effort and strain would have been life-threatening.
“I know it sounds incredibly histrionic, but I honestly think the stress of having to do that myself … probably would have killed me,” Meyers confides. “And I doubt I’m the only person who is in that situation [when applying].”
But Meyers still feels the repercussions of SSDI even if her initial application process was relatively painless. After all, the SSA still checks in to make sure she has not recovered.
“It’s just constant,” she says. “And that’s not fair. Nobody else has to keep running around proving they have a right to exist with documentary evidence.”
As for me, my appeal was approved following my neuropsychology evaluation (during which the neuropsychologist referred to me as “damaged goods”). Now, I am walking the delicate line between making enough to feed myself but not enough to lose my health insurance. I would like to pull myself out of this hole. I would like to save. But I need health insurance and none of my employers provide benefits nor enough money for me to pay for it myself – much like Lenisha Brown’s predicament. It does not help when the people who are supposed to help you do not believe or trust you.
“It was a really frustrating process,” Brown says. “It’s really bad. In the offices, people have this vibe like ‘You’re faking it.’ Even with all my paperwork and my doctor’s diagnosis and everything.”
And with Trump’s proposed changes, it may become even more difficult for disabled people to “prove” they are disabled and need help. The Social Security Administration has already released a missive stating they intend “to revise our regulations regarding when and how often we conduct continuing disability reviews (CDR), which are periodic reviews of eligibility required for benefit continuation.”
“Whatever the future holds for us,” Meyers concludes, “as far as the Trump administration’s plans … it’s terrible – just every day [we are] waiting for another shoe to drop.”
Al Jazeera contacted the Social Security Administration for a response to this article but received no reply.