LINDON, Utah — The Wal-Mart cashier holds his body stiff, bending when he walks, the strained look on his thinly-bearded face suggesting continuing discomfort, if not outright pain. It's a Saturday night in Lindon, the end of a long work day. But Dal Schrader is more than just tired.
Partially paralyzed, with one leg longer than the other, the 46-year-old married father of two walks awkwardly on his toes. He can’t hold a fork or a pen with his left hand, and the medicines that control his seizures leave his right side shaking, such that he can’t feed himself without spilling. Once intermittent, the seizures now occur weekly, and often at work.
When he was six, Schrader fell at a school playground. A blood clot followed, which led to a stroke, leaving half his body partially paralyzed, his mind clouded with short-term memory problems, his speech often halting and unsure.
Social Security Disability Insurance was built for people like Schrader, but to qualify, he must first drop to part-time and earn less than $1,010 a month while his claim is processed, which can take one to three years.
Many with less severe difficulties do qualify. Over the last 20 years, the disability rolls have burgeoned. In 1989, just 2.3 percent of Americans aged 25-64 received SSDI benefits. Today, that number has jumped to nearly 5 percent, or nearly 9 million adults.
That jump was not cheap. In 1990, Social Security spent $20 billion a year on disability. Today, it spends more than $128 billion.
And much of this growth went to often hazy claims that are hard to prove, including mental disorders and back pain. And many are not so much disabled as they are economically bypassed.
“When coal prices fall there is a surge of disability applications out of the Appalachian region,” said David Autor, an economist at the Massachusetts Institute of Technology, adding that people with back ailments or low level depression tend to tough it out until economic desperation forces their hand. “They lose work, they look around, they can’t find anything, and they get desperate. Eventually, they turn to disability.”
The rising burden of disability falls on every American worker. The fund pulls 1.9 percent from everyone’s payroll taxes, and that fund will run dry as early 2016, by current estimates. The Social Security Administration will then divert already overstretched retirement funds, tap an already empty general treasury, cut benefits, or clamp down on eligibility.
Like most federal entitlements, the disability program faces an existential crisis, as limited resources stand in the way of ever-expanding expectations.
Later this month, a key Social Security advisory board will meet to fix the disability system by getting fewer false positives that drive up costs and fewer false negatives that chew up lives.
All or nothing
When SSDI was enacted in 1956, “an able worker could maintain a job and didn't need assistance from the disability program, but a disabled worker couldn't possibly work, and needed the government to provide income and medical care,” said MIT's Autor.
The 1956 disability law, still in force, treats a disabled worker as an oxymoron. You are either a worker or you are disabled — not both.
That model is now “totally outdated,” Autor said, “partly because work is more sedentary, and medicine can actually help you. But also because attitudes have greatly changed.” The very purpose of the 1990 Americans with Disabilities Act, he notes, is to integrate the disabled worker into the labor force, by compelling employers to be more accommodating.
“Many Americans are willing and able to work,” Autor said, but work limitations under current law “curtail their earning power and raise their health costs.”
Moreover, Autor argues that by driving disabled claimants off-line for the two to three years it takes to process a claim, they become permanently disconnected from the job market.
If they weren’t disabled before, they are after grinding through the process. "A well-designed public disability program should do more for people like Dal Schrader,” Autor said.
Stiff upper lip
Dal could do fine with part-time work said his wife, Sara, but at the moment they cannot afford the pay cut. “He’s good for the first six hours,” she said. “But for the last two, he really struggles.”
Twice, Sara said, Dal was sent home from work early, after customers said they thought “that cashier” was stoned. He was really just exhausted. “He’ll get confused because he’s tired, or he’s not fast enough for the customer,” Sara said.
The first couple of times that Dal had a seizure at work, Wal-Mart managers called an ambulance. This cost the family $1,200 out of pocket each time. Now she keeps a phone with her, serving as her own ambulance. She handles routine seizures at home. Her role, she says, is “to make sure he doesn’t swallow his tongue.”
Dal is extremely tough and very stoic. To a fault, Sara fears. Reluctant to tell people how bad he hurts, he often understates matters. "It's not so bad most the of the time," he tells me, "but it is tough when I get tired."
Dal likes to emphasize his capabalities. He describes being on a swim team in his youth, and how with great effort he was able to strengthen his weaker arm so he could swim straight. He and Sara met at a dance and have enjoyed ballroom dancing over the years, despite their physical challenges.
Dal's demeanor with his family is remarkably relaxed. His eyes have a perpetual twinkle. He exudes zen. For some, lifelong challenges like this might be an excuse for an edgy temper, but Dal seems to have been mellowed instead.
Sara juggles Dal and the children, aged 5 and 10, while managing her own substantial health challenges. Her spine has a disintegrated disc, and in her digestive tract she suffers from internal keloids, or expanding excess scar tissue. Last year, she was diagnosed with fibromyalgia.
Still, Sara is looking for a night shift job that she could manage while Dal is safely home and asleep. This will allow Dal to drop to part-time employment long enough to meet rigid SSDI work requirements.
It's a difficult balance. For now, the family cannot afford to forgo Dal's income while waiting out the lengthy process.
The system that is pushing Dal Schrader out of the workforce is doing the same to millions of other Americans, many of whom could work full or part time with partial disability support.
If the Americans with Disabilities Act was supposed to get more disabled workers into the work force, it seems to have failed. In fact, the sharp spike in disability claims began when the ADA was passed, notes Jennifer Erkulwater, a professor of political science at the University of Richmond in Virginia.
“Everyone thought the ADA was going to open up work to people with disabilities and they would become taxpayers,” Erkulwater said. “In fact, it had the exact opposite effect.”
Erkulwater suspects that the ADA, combined with 1984 policy changes that opened up disability claims for mental and musculoskeletal disorders, drove up claims by destigmatizing disability and encouraging new types of disorders.
“Are we diagnosing more things? Is the structure of work more injurious?” asked Deborah Stone, who teaches public policy at Dartmouth. “Or is disability being normalized, now a normal part of human experience, less stigmatized, less shocking to say to oneself, 'Gee, maybe I should think of myself as disabled?'”
Stone has been working on disability policy since the early 1980s, when she wrote her landmark book, "The Disabled State." Stone views disability as “socially constructed,” arguing that disability for one person in one place and time would not be for another. “Disability is deeply socially implicated, embedded in the structure of society and the structure of people’s lives,” Stone said.
With the rise of muscle, joint and mental complaints, the core of disability is pain. These complaints are very real, as Sara Schrader notes in discussing her own fibromyalgia. But they are also immeasurable, and thus, highly subjective from one case to the next.
In lieu of an elusive “painometer,” doctors ask patients to rate pain on a ten point “pain scale,” using this number to measure disability. “But we know that pain is a subjective experience,” Stone said. “People have different levels of tolerance of pain.”
In addition to pain, the key non-medical variable is the collapse of options for many who cannot adapt to the new economy.
“Disability is largely dependent on the demands of the occupation,” Stone said, “hinging on what kinds of demands are available in the economy at any given moment.”
“To injure your pinky finger would disable a concert violinist, but wouldn’t disable anybody else,” Stone said.
Social Security’s chief actuary Steve Goss agrees. Testifying before a Congressional panel in 2011, Goss argued that “disability is by nature a very subjective concept that depends on a “myriad of issues related to a person’s residual functional capacity, past job experience, desire to work, and availability of suitable jobs. All of these issues differ among individuals, across geographic regions, and over time.”
And pain that is readily endurable when jobs are plentiful may become “too much” when jobs are scarce. Hence, the spike in claims when the coal industry suffers.
A successful applicant has to argue that they cannot find work doing what they were trained to do, and their health prevents them from other lines of work. The system also factors age, Autor said. “If you have just a high school education, and you are over 55, then you are deemed not retrainable.”
The labor market
The lesson of coal prices is that the troubled labor market is the driving force in disability policy, according to Autor.
“If you are going to have a long term program for people who cannot find employment, you should do that, but this is not that program,” Autor said.
The shift toward a knowledge economy makes physical problems less important, Autor notes, allowing wheelchairs in the office, for example. “However,” he added, “fewer and fewer people are capable of doing jobs in the knowledge economy.”
Autor notes that Stone’s disabled violinist with the ruined pinky finger would likely have a college education, and thus be deemed retrainable under disability law.
But that is the exception in the midst of a vast cohort whose fragile career footing helped transform disability insurance into an economic safety-net.
Why wouldn’t they?
With economic dislocation driving a system centered on subjective pain and psychological distress, outcomes on claims vary widely. The system is also complex, lengthy and multi-layered.
State officials make the initial determination, rejecting 65 percent of claims, according to a 2010 paper coauthored by Autor and the University of Maryland’s Mark Duggan.
From there, the next level is an appeal to the federal agency, usually rejected. Then it’s on to an administrative law judge, where the real action begins. The vast majority of those rejected at the first two stages move on to an ALJ appeal.
And why wouldn’t they? ALJs overturn 75 percent of rejections, Autor and Duggan wrote, though there is wide variation from one ALJ to the next. With a ratio like that, anyone who does not appeal is not playing the game properly.
The result is a tortuous process where claimants must commit to a two- to three-year process before they get an actual determination.
“It’s not just a problem between the state and the ALJ level,” said Erkulwater. “There is also a great deal of variation from state to state.” Even within a state, she says, there is great difficulty in fixing an “equitable and coherent policy.”
Finding a fix
In March, Autor will join other disability policy wonks in Washington to take a hard look at one program in crisis (SSDI) embedded within another, also in crisis (Social Security). With the 2016 fund depletion looming, a fix must be found. All options are on the table, including tighter filters at the front end and less generous benefits.
As things stand, Autor’s greatest fear is that the no-work requirements and lengthy determination process will combine to permanently drive workers out of the economy, including those who might easily have stayed in with help.
Also high on his agenda is an alternative transitional safety net for displaced workers adrift in the new economy.
“For those with low skills and low employability, the U.S. lacks any long-term support programs, wage insurance, job training,” Autor said. “The U.S. is not really set up to help people who have become permanently displaced from work.”
Autor and Duggan’s 2010 paper laid out a proposal to redirect the disability system “toward supporting employment — opposite of its current configuration.”
They see their proposal strictly as a dialog starter, Autor said. It calls for a flexible program that catches disabled workers early, screens them better, and helps them stay in the workforce instead of dropping out.
Meanwhile in Lindon, Dal Schrader continues to work fulltime at Wal-Mart, fighting fatigue and braving seizures. Sara is looking for a graveyard shift that will allow her to manage her own health issues while still being there for her children and Dal.
Their plan now is to drop Dal to part-time and reapply for SSDI. With luck, and yet more patience, the program already doing so much for so many at such great expense may finally find the man for whom it was meant.
Eric Schulzke writes on policy and politics for Deseret News. He earned a PhD in political science at U.C. Berkeley, and in his spare time works on The Apollo 13 Project, a prisoner reentry awareness project at www.a13.org.
Copyright 2015, Deseret News Publishing Company