Photograph via Flickr by John Williams

Doug Stanton enjoyed cooking as much as he enjoyed anything. Late in his life, he made dinner most nights with his ex-wife Laurel, who lived in an identical apartment one floor below his at their motel-style complex in a working-class suburb of Seattle. He told me his favorite dish was Tuna Helper. “We put in two cans of albacore tuna—the good stuff—and then we put in a half a cup of frozen peas and some onions, all the while trying to keep the noodles al dente.” At the time, Doug didn’t have any teeth. He liked to add “three-quarters of a cup of sour cream to make it, you know, good and fatty, but it makes it really tasty.” He said this with a self-deprecating smile. He weighed 345 pounds. “We don’t usually have leftovers with that.”

I was Doug’s doctor when I was a resident in family medicine at the University of Washington and I looked forward to chatting for a few minutes at each visit. He had wide ranging interests: the Large Hadron Collider, the Seahawks, and whatever hot topic there was in national politics. Doug’s medical problems were complex, and frustrating to both of us, but we always enjoyed the conversation. (This story alters several names and identifying details.)

I called Doug again about a year after I’d graduated from residency. He was no longer my patient but he agreed to meet me for a series of interviews about his life before disability and his experience with the disability system. I’d taken a job doing physical examinations for Social Security disability applicants. The job had a flexible schedule, which, at the time, was worth its low prestige. There is a stereotype of people who apply for disability: they don’t take care of themselves and don’t want to work, exaggerating their maladies for a meager check. There is also a stereotype of the doctors who do this work: lazy and disinterested. I found the job fascinating. The more I learned about the disability system, the more I pondered its complexities: it provides a safety net but keeps people mired in poverty. Helpful services, including job retraining, are available, but aren’t advertised. And the system rests on a deeply flawed premise—that there is a way to objectively determine who is able to work and who is not. The claimants I met through the job were certain that obtaining disability benefits was going to improve their lives, and they were desperate to tell me their stories. Doug had been subsisting on Social Security Disability Income (SSDI) since 2002, before I met him, and I wanted to hear his.

Payments to the disabled and their families make up about 20 percent of new Social Security awards every year, with retirement benefits constituting most of the rest. Even though Social Security remains in surplus, with the amounts taken in from taxpayers exceeding the amount owed to them, American politicians fret about the impending bankruptcy of Social Security and blame the aging baby boomer generation. Annual awards to disabled workers, however, are increasing. According to the Wall Street Journal, in 2010 one of the two Social Security programs paid out $124 billion in benefits to 10.2 million people.

On the basis of a forty-minute interview and examination, I was supposed to determine how disabled an applicant or “claimant” was.

In the 1980s, before Doug’s life unraveled, he was making a good salary at an engineering firm in Seattle. His work was complex: he helped build a crane for NASA that assembled orbiters at Kennedy Space Center and an underwater crane for nuclear submarines. He and Laurel married in 1983 and she brought three children into the marriage. Doug quickly came to consider them his own. They owned a house in the working-class suburbs south of Seattle. But in the winter of 1996, when the tingling started, Doug’s life started to fall apart.

He felt it first in his right arm: little electrical pinpricks in the tips of his fingers that shot up to his elbow, causing an aching heaviness at his shoulder. After months of physical therapy the pain had only worsened and spread. An MRI showed the cause of the problem: his spine was collapsing around his spinal cord, crushing many of the nerves, and strangling the cord itself: cervical spinal stenosis. It was bad luck—there was no injury that caused it, no family history that would have predicted it. A neurosurgeon operated to stabilize the vertebrae and take pressure off the spinal cord, but the cord had suffered permanent damage and the pain never lessened. He started drinking to dull it, the drinking affected his work. Eventually he lost his job.

He spent his severance on a drafting table so that he could continue to do part-time work from home. Then, too disabled to support himself completely, he applied for Social Security Disability Insurance.

Before 1956, when Social Security expanded to include disability benefits, disabled workers had to rely on their families or on state welfare for financial subsistence. The 1956 federal bill was controversial—it was expensive, and many politicians thought that paying the disabled not to work would lead to laziness. But Henry Jackson, a senator from Washington, passionately argued for the benefit: “It should be clear to all of us that no matter at what age a person becomes totally and permanently disabled, he needs Social Security payments worse than a person who retires at sixty-five in good health. The worker who is disabled early in life usually has accumulated less savings than has an older person. He has more dependents to care for than has an older worker whose family has grown up and left home… Retirement after one’s working years can be planned for. Disability strikes without warning.” President Eisenhower signed the bill, giving rise to SSDI, which allowed workers to collect their Social Security prior to age sixty-five if they became disabled. In 1974 the program added Supplemental Security Income, or SSI, which provided minimal payments to the disabled, including children, who had not contributed enough to Social Security to qualify for SSDI.

Doctors were leery of the bill. They worried that they would be put in the uncomfortable position of deciding whether their patients, people they may have known for years, were eligible for this income. To deal with this concern, applicants are now often sent to doctors who work for private staffing firms that contract with the government. This was my job, “independent medical examiner.” On the basis of a forty-minute interview and examination, I was supposed to determine how disabled an applicant or “claimant” was.

My first day was a Saturday, in Spokane, Washington. The receptionist showed me around the office, and pointed out where I could discreetly watch the claimants walk back out to their cars. This was so I could see if a limp disappeared, or a wheelchair went unused, once the claimant had left the office. “I’m sorry to say it but you’ll meet the scum of the earth doing this job,” she explained.

I did hundreds of disability exams over the next year, and while I did meet two people who were obviously faking, for the most part the stories I heard were heartbreaking: car accidents, massive strokes, lost jobs, dead spouses. Many people who apply for disability have lived through a tragedy. But the stories also told of the inefficiencies of the disability system. That first day in Spokane I met a man who had worked in manual labor his whole life, but for years had been getting crushing chest pain after walking a few blocks. His blood pressure was dangerously high. His condition was obviously treatable, but he did not have insurance so he had not been to a doctor in years. He knew that if he qualified for permanent disability he would eventually get Medicare or Medicaid and get proper treatment. He had no idea he could go to a community health center, a federally financed clinic where he could pay on a sliding-scale basis. With the right treatment and a less strenuous job, he would probably have not needed disability.

Their marriage broke when Laurel heard from a friend in the trailer park that if she were single, she could qualify for SSI.

Doug’s first application for disability was denied. He was using his drafting table to freelance occasionally for his old company, barely making enough to cover his daily necessities and falling short on his mortgage. But because he was working, he wasn’t considered disabled. It’s likely that if he’d applied for welfare instead of trying to freelance, he would have been approved right away. As it was, the pain continued to worsen—even the lightest touch on his hands burned like an electric shock. He had to stop working altogether. He and Laurel sold the house and moved to a trailer park just in time to avoid foreclosure.

This began the darkest period of his life. He was in constant pain, with no work, no health insurance, and no income. Laurel was struggling too. She’d been diagnosed with bipolar disorder and her mood became increasingly volatile under the stress. Their marriage broke when Laurel heard from a friend in the trailer park that if she were single, she could qualify for SSI. She knew this would give her a small income and Medicaid coverage, and all of a sudden she felt that Doug was holding her back. In hindsight it’s likely that Laurel would have qualified even without separating from Doug, but misunderstandings like this are common.

Doug, depressed and alone after she left, became overwhelmed with his pain. “At that time I was actually exploring methods of suicide because the pain was so awful and I was getting nowhere with it.”

Pain is one of the most frequent complaints on disability applications, and one of the hardest to evaluate. The job of an independent medical examiner is often to determine a claimant’s “residual functional capacity,” the number of hours they can spend doing different physical activities, like standing, bending, reaching, or crawling. I had to estimate whether somebody could sit for two hours, four or eight. And while I could tell if a claimant looked comfortable sitting for twenty minutes while I asked them questions, I had no way to judge whether they could maintain this all day long, five days a week. The training for my job, in addition to my medical degree, had consisted of a handbook and a brief phone orientation. As I filed reports in the subsequent months, I often wondered if I was getting it right.

Doctors have complained that they are unable to determine disability since the inception of the system. It was a concern which Senator Walter George of Georgia blithely dismissed in 1956 during debate on the Senate floor: “Many American doctors are afraid that they cannot determine when a man or a woman is disabled… Doctors have less confidence in themselves than I have.” And while some cases of disability are very clear cut—people who’ve suffered massive strokes, or have ALS (Lou Gehrig’s disease)—many disorders, especially those that cause pain, have no objective findings. A large number of disability claims are for back pain and psychiatric illnesses, conditions which the medical community does not completely understand and for which the diagnoses can be quite subjective.

Although the passage of the Americans with Disabilities Act in 1990 attempted to make the workplace more hospitable for those with disabilities, it did not lead to increased employment for the disabled, nor a decline in disability applications.

I bought extra books and searched medical journals to see if I could find any information about how to make more rigorous determinations. I couldn’t. Physicians Mark Melhorn and James Talmage, considered authorities in this field, have authored hundreds of papers and collaborated on several textbooks. In general, their arguments are based on four assumptions:

1. Working people are healthier and live longer than nonworking people.

2. People who retire early due to disability are less healthy than people who retire early for other reasons.

3. Doctors are not good at estimating how much people can work.

4. Pain is not necessarily bad for your health.

Some medical evidence supports each of these. But the conclusion that Melhorn and Talmage draw is something of a leap. They argue that people with disabilities should return to work, particularly if pain is the only thing stopping them. It almost certainly doesn’t make sense for someone like Doug, whose pain was so debilitating it led to contemplations of suicide. Additionally, this is not how physicians are trained to approach medical problems. For most illnesses, the diagnosis derives mainly from what a patient tells a doctor. The physical exam, lab tests, and X-rays then help confirm what is already suspected. In disability determination, however, physicians are supposed to use only these “objective” factors since the claimant can be motivated to be untruthful in order to receive benefits. Pain is subjective and not supposed to be taken into account.

Doug searched for ways to deal with his pain, and, through word of mouth, found his way to a community health center. There a neurologist recommended pain medications for him, medicines originally developed to combat seizures but which seem to alter the way the brain perceives pain. They were expensive, but Doug, resourceful with the Internet, figured out how to get them for free from the drug companies’ charity programs. The medications helped, the pain eased, and the thoughts of suicide stopped.

As the pain receded, his life started to become more stable. He stopped drinking, moved in with his mother, and after applying yet again he finally qualified for disability benefits. After a mandatory two-year waiting period, he qualified for Medicare. (In addition to the income support, recipients of SSDI can also get Medicare health benefits, generally after a two-year waiting period. Those who qualify for SSI usually receive Medicaid without a delay.)

In the 1950s it was estimated that 250,000 people would be eligible initially for the new disability benefit. By December 1974, nearly 4 million adults were receiving disability payments, and by December 2005 the number had grown to 7.1 million. This increase in people who are considered too disabled to work has far outpaced the growth of the population, and it’s happened in the context of astounding advances in medicine, which have made formerly debilitating illnesses treatable. Although the passage of the Americans with Disabilities Act in 1990 attempted to make the workplace more hospitable for those with disabilities, it did not lead to increased employment for the disabled, nor a decline in disability applications.

As of this year, Social Security is reportedly paying out more in benefits than it collects in revenue, putting pressure on the system to become more financially sustainable. Many economists propose stricter requirements for disability, letting far fewer people onto the rolls.

With the arbitrary nature of the medical determination, getting approved for disability probably depends on persistence as much as anything.

This is what happened in the Netherlands eight years ago: the Dutch tightened their criteria for disability and required employers to contribute to some of the disability payments. They were able to decrease the number of people on disability rolls by 15 percent (the U.S. has never seen any drop in disability recipients) and were able to show that those people had not simply transferred their needs to other government security programs, but were actually back at work. However, the Netherlands has a compulsory health insurance program, so the disabled, who have higher health care needs, were able to continue receiving health care no matter what type of employment they could find.

The assumption is that many people who get denied disability payments will eventually find a way to go back to work. This is obviously not true for the most severely disabled, but the Dutch showed that it should be true for some. However, in the U.S., many claimants who are denied Social Security don’t return to work. They reapply for Social Security over and over again, meanwhile managing to fund their lives with help from family, friends, and the state.

This patience often pays off. With the arbitrary nature of the medical determination, getting approved for disability probably depends on persistence as much as anything. Most disability applications are initially denied, but many decisions get overturned later. In 2005, for every 100 disability claims decided, sixty-four were initially denied. Twenty-two of these denials appealed for reconsideration, and sixteen were eventually successful. And because the appeal must happen within sixty days, many of those that don’t appeal have simply missed the deadline and, like Doug, apply from scratch again, often getting approved in a subsequent application.

Claire Hobart is in her forties and has advanced osteoarthritis in her left hip. Her doctor is a former colleague of mine, and, like Doug, she agreed to discuss her struggles with the disability system. She has a high school diploma and worked for years as a waitress and cashier. When she was in her early thirties her hip started aching and she had trouble standing for hours behind a cash register. Five years ago the pain got so bad that she stopped working and applied for disability. She was denied. She reapplied and was denied again.

After five years of being unemployed, Claire is poor. When I spoke with her over a year ago, she shared a one-bedroom house in Seattle with her boyfriend, her seventeen-year-old son, her niece, her niece’s boyfriend, and a terrier named Little Feet. There was a full-sized mattress in the living room and the sofa was also made up as a bed. Rent was eight hundred dollars a month: Claire got 453 dollars a month from welfare and her boyfriend worked intermittently as a house painter. Her niece was out of work. Welfare entitled Claire to basic health benefits from the state, but once her son turned eighteen her welfare would disappear.

In the SSI denial letters Claire received, she was told that she should be able to get a job that did not involve standing, and they suggested that she consider a secretarial job. Claire was skeptical that somebody with no secretarial experience, who could not type, could get that sort of job. Instead, her plan was to get approved for disability, qualify for Medicaid, then receive a hip replacement and regain some function, maybe even enough to return to work. So even after her many denials, Claire was not looking for work. She was applying again for SSI.

The denial letters Claire received did not tell her, and she had no way of knowing, that she could qualify for job retraining with the federally financed, state-administered departments of vocational rehabilitation. DVRs offer career counseling to help the disabled find jobs that will accommodate them. They will arrange for vocational training courses and internships, and they offer financial assistance with college. If clients need appropriate clothes for a job interview, DVR can even give them one hundred dollars towards an outfit.

Poverty is closely linked with poor health, and the trivial size of disability benefits condemns the disabled to a life of poverty.

Even with these resources and a dedicated staff, DVR results are not spectacular. Each of the thirteen counselors at the Seattle office carries a caseload of about 100 clients. They are expected to find a job, a position which the client must keep for at least ninety days, for twenty-five of the 100 within a year. The manager of the Seattle office estimated that only two or three of her counselors would be able to make the yearly goal. And many of the disabled who make it back into the work force still collect disability. I attended an orientation where many prospective clients were concerned about enrolling in the program because they didn’t want to lose their benefit checks. The presenter reassured them: “A lot of you may be receiving SSI, SSDI. It is not our intent to get you off that… You can often earn up to nine hundred dollars a month on top of SSI or SSDI.” In order to encourage the disabled to return to the workforce, they are allowed to earn income to supplement their benefit (the amount of income depends on the benefit amount).

When I talked with Jen Bean, a benefits coordinator who helps DVR clients understand their various entitlements, she insisted that about one-third to one-half of the people she counsels eventually relinquish at least part of their benefits. But her objective, she explained passionately, is not to get people off of the disability rolls, but to help them out of poverty in any way she can. Her goal is worthy: poverty is closely linked with poor health, and the trivial size of disability benefits condemns the disabled to a life of poverty. It’s not clear that disability benefits improve the health of the disabled or their quality of life.

For the last years of his life, Doug received regular health care and his monthly disability checks. He got eighteen hundred dollars per month, more than the average (eleven hundred dollars), because the benefit rate is based on pre-disability earnings. After his mother passed away, he floated through long-term motels but eventually found a subsidized apartment building, the same one Laurel lived in. Laurel’s finances were precarious but Doug made sure she always had enough for her necessities. She’s on SSI, receiving just under seven hundred dollars a month.

They reconciled a few years ago, and between eating and watching TV, they spent most of the day together. This life was sedentary and Doug gained weight, causing a number of health problems. His legs got swollen and broke out in sores. He was supposed to sleep with a mask to help him breathe; he had severe heart disease. Not surprisingly, he struggled with depression. The pain remained and after Medicare’s prescription drug service started, the drug companies stopped the charity programs he’d relied on. He had to stop one of his pain medications because the expense put him in the “donut hole” of Medicare Part D. (After one reaches certain medication expenditure, usually 2700 dollars, one has to pay the additional costs, until you reach a higher threshold, 6100 dollars, when Medicare kicks in again.) As a result, his pain was less well controlled than it had been in the past.

Doug’s story could be any of ours. He went to college, worked hard, and had a family. His illness, not the disability system, destroyed this life. But the system didn’t help him put it back together with the dignity or autonomy he would have liked. Because Social Security will eventually run out of money, it will be forced to change. When it does, it will be an opportunity to fix the holes, to coordinate agencies and better counsel beneficiaries so that they can use the skills they have, and the skills they can acquire to rebuild their lives.

After this article was written, Doug Stanton was diagnosed with Hodgkin’s lymphoma. He died earlier this year.

Heather Kovich

Heather Kovich is a family physician with the Indian Health Service. She currently works and lives on the Navajo reservation in Shiprock, New Mexico.

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