By the time Stephenie Hashmi was in her mid-20s, she had achieved a lifelong dream 鈥� she was the charge nurse of one of Kansas City鈥檚 largest intensive care units. But even as she cared for patients, she realized that something was off with her own health.
鈥淚 remember just feeling tired and feeling sick and hurting, and not knowing why my joints and body鈥� hurt, she said.
Hashmi was diagnosed with , a medical condition in which the body鈥檚 immune system attacks its tissues and organs. She鈥檚 had surgery and other treatments, but now, at age 41, Hashmi is often bedridden. She finally had to leave her job about six years ago, but when she applied to the Social Security Administration for , she was denied.
鈥淚 just started bawling,鈥� she recalled. 鈥淚 felt like, if they looked at my records or read these notes, surely they would understand my situation.鈥�
In the U.S., fewer than half of people who apply for disability benefits 鈥� about 45 percent 鈥� are ultimately accepted, says Lisa Ekman with the . Getting a hearing takes an average of .
鈥淚t is not easy to get disability benefits, and it鈥檚 a very complicated and difficult process,鈥� Ekman said.
It may become even harder for people like Hashmi, whose disability is difficult to see or measure. This spring, the Social Security Administration introduced changes to fight fraud and streamline the application process, including a that removes special consideration given to a person鈥檚 longtime doctor. Ekman said this is a mistake.
鈥淭hose changes would now put the evidence from a treating physician on the same weight as evidence from a medical consultant employed to do a one-time brief examination or a medical consultant they had do a review of the paper file and may have never examined the individual,鈥� Ekman said.
She said this could lead to more denials for disabled people with complex conditions like lupus, multiple sclerosis or schizophrenia. These illnesses can affect patients in very different ways and may be hard for an unfamiliar doctor or nurse to evaluate. Ekman said more denials will lead to more appeals, which will increase the backlog.
That started snowballing about 10 years ago, said聽; he鈥檚 now a senior research fellow in public policy at George Mason University鈥檚 , but was acting deputy commissioner of the Social Security Administration back then. During the recession, he said, a lot of people who applied for benefits were disabled but not necessarily unable to work.
鈥淭hey can work, but when the recession happens, those are the first people who tend to lose their jobs and then they apply for disability insurance,鈥� he said.
There are now more than a million people across the country waiting for hearings, and, adding to the strain, the administration鈥檚 core operating budget has shrunk by 10 percent since 2010.
Fichtner said the agency is obligated to weed out any and all fraud it can 鈥� including the rare cases in which a patient鈥檚 personal physician might be trying to tip the scale to get a patient benefits. Fichtner said the administration can still legitimately prioritize applicants if its investigation shows the patient鈥檚 disability, though not obvious, merits it.
鈥淔or patients that are really in dire condition and really have major disabilities, I don鈥檛 think they have to worry about these rule changes,鈥� he said.
He acknowledges that the backlog needs attention and says the agency has safeguards to monitor whether the rule is working.
In Kansas City, Stephenie Hashmi is still struggling with lupus, and still struggling to get disability benefits. She鈥檚 increasingly pessimistic. After several rejections from the Social Security Administration, Hashmi鈥檚 appealing again. Her hearing is scheduled for November 鈥� of 2018.
This story is part of NPR鈥檚 reporting partnership with KCUR and .