Alex Smith / KCUR
By the time Stephenie Hashmi was in her mid-twenties, she had fulfilled a lifelong dream: she was the nurse in charge of one of the largest intensive care units in Kansas City. But even as she cared for the patients, she realized that something was wrong with her own health.
“I just remember being tired and sick and injured and not knowing why my joints and body were hurting,” she says.
Hashmi was diagnosed with systemic lupus, a disease in which the body’s immune system attacks its own tissues and organs. She has had surgery and other treatments, but now, at 41, Hashmi is often bedridden. She eventually had to quit her job about six years ago, but when she applied for disability benefits from the Social Security Administration, she was turned down.
“I just started screaming,” she recalls. “I was under the impression that if they looked at my files or read these notes, they would surely understand my situation.”
In the United States, less than half of people who claim disability benefits – about 45 percent – are ultimately accepted, says Lisa Ekman of the National Organization of Social Security Claimants’ Representatives. Obtaining a hearing takes on average almost 600 days.
“It’s not easy to get disability benefits, and it’s a very complicated and difficult process,” she says.
It could becomes even more difficult for people like Hashmi, whose disability is difficult to actually see or measure. This spring, the Social Security Administration introduced changes to combat fraud and streamline the application process, including a new rule that removes special consideration given to a person’s long-time doctor. Ekman says this is a mistake.
“These changes would henceforth give the same weight to the evidence of an attending physician as to the evidence of a medical adviser employed to perform a brief one-off examination, or of a medical adviser whom they have had the file examined. paper – [who] may never have examined the individual, ”says Ekman.
She says relying on those reviewers who don’t know the patient could lead to more denials for people with disabilities with complex conditions like lupus, multiple sclerosis or schizophrenia. These illnesses can affect patients in very different ways and can be difficult for an unfamiliar doctor or nurse to assess. Ekman says more denials will result in more calls, which will increase the backlog.
This backlog started to snowball about 10 years ago, says Jason Fichtner; he is now a senior public policy researcher at the Mercatus Center at George Mason University, but was at the time Acting Deputy Commissioner of the Social Security Administration. During the recession, he says, many of the people who applied for benefits were disabled, but not necessarily unable to work.
“They can work, but when the recession hits, it’s the first people who tend to lose their jobs and then they apply for disability insurance,” says Fichtner.
There are now over a million people across the country awaiting hearings and, adding to the pressure, the administration’s core operating budget has shrunk by 10% since 2010.
Fichtner says the agency is obligated to rule out all possible fraud, including the rare instances in which a patient’s personal physician might try to tip the scales for patient benefit. Fichtner says the administration can still legitimately prioritize applicants, if its investigation shows that the patient’s disability, while not obvious, deserves it.
“For patients who are really in critical condition and really have major disabilities, I don’t think they need to worry about these rule changes,” he says.
Fichtner acknowledges the backlog needs attention and says the agency has safeguards to monitor whether the rule is working as it should.
But in Kansas City, Stephenie Hashmi is still struggling with lupus and still struggling to get disability benefits. She is more and more pessimistic. After several refusals from the Social Security Administration, Hashmi appealed again. Its hearing is scheduled for November-2018.
This story is part of NPR’s reporting partnership with KCUR and Kaiser Health News.