Using a cane to balance her steps, Adrianne Gunter made her way to a small courtroom on the 21st floor of a Center City building where a judge awaited via video screen.
Gunter had been waiting 788 days for this hearing Dec. 13. The 33-year-old West Philadelphia native and University of the Arts graduate was diagnosed with multiple sclerosis in 2015, derailing her dreams of using her degree in television and film writing to work in the entertainment industry. Gunter, who lives with her mother, is seeking Supplemental Security Income (SSI) — federal aid for those who are poor and disabled, blind or elderly.
"I don't like it that my mother has to take care of me. I want to help her," Gunter said in an interview.
Across the country, more than one million people are waiting — sometimes for more than two years — for an appeal hearing to determine whether they qualify for these disability benefits. The majority of initial applications are denied. The Social Security Administration called its backlog of pending appeals a "public service crisis."
In Philadelphia, more than 10,000 people are caught in the backlog. Similar numbers are waiting in South Jersey and the Philadelphia suburbs.
SSI pays 8.1 million people nationwide an average of $526 a month, often used for rent, groceries, and other basic necessities. Like Gunter, most also rely on Medicaid for health care.
The Social Security Administration says it does not have enough administrative law judges and support staff to handle a backlog that started more than a decade ago and was exacerbated during the recession. Hiring freezes made it hard to catch up.
As of November, the Philadelphia Office of Disability Adjudication and Review had the longest average wait time in the country: 26 months from the time a person requests a hearing until the hearing itself, according to SSA figures. The South Jersey office had a 23-month average wait, and the suburban office in Elkins Park had an average wait time of 20 months. Even after a hearing, it takes months to get a decision.
SSA's target is an appeal decision within 270 days, about nine months, of requesting a hearing. The national average is 591 days.
Meanwhile, applicants are dying. The Social Security Administration reported that 8,699 people died nationwide in 2016 awaiting a decision on benefits.
"The stress of having no money in addition to health issues can cause a decline in health — sometimes that stress can be fatal," said Stacy Cloyd, deputy director of government affairs at the National Organization of Social Security Claimants' Representatives (NOSSCR), which represents SSI applicants across the country.
One such applicant was a Philadelphia Community Legal Services client who was 45 years old when she sought the agency's help with her appeal in 2016. The woman had diabetic neuropathy, or nerve damage in the legs and feet, and a chronic ulcer. While awaiting a hearing, she complained that she had no money and that her utilities were being turned off. CLS attorneys requested that government declare the woman in "dire need" in hopes of expediting things.
"A few months thereafter, Social Security reached out to inform us that they received information that the client had died," Jennifer Burdick, one of the CLS attorneys, said. "We never learned the cause of death."
Not enough judges
The SSA has hired 396 administrative law judges in the last two years, well below the 500 it says it needed.
The Philadelphia office, for example, has seven judges, while the Philadelphia East office has eight. Each office has more than 5,000 pending cases.
As one workaround, the administration has increased its use of video conferences for hearings, using judges from offices with lower caseloads to help. Philadelphia had 1,300 such hearings last year, according to SSA spokeswoman Nicole Tiggemann.
Still, some advocates say that seeing a disabled person on video instead of live doesn't have the same impact.
Whether it's video or in-person hearing, the wait is arduous, said Litefia Marrow, of Philadelphia.
When Marrow's 3-year-old daughter, Mallorey, was diagnosed with cerebral palsy in 2013, Marrow applied for SSI on behalf of her daughter. While Mallorey was initially approved, Marrow said, the checks stopped coming after three months. So, Marrow appealed in 2014.
She waited 22 months for a hearing. During that time, she quit her job as a lead file clerk at the Blank Rome law firm to take care of her daughter, who needed constant medical attention.
"I dipped into my 401(k) to help pay for bills," Marrow said. She eventually had to find part-time work. But even then it wasn't enough to cover rent, utilities, plus her daughter's various therapies and early intervention care.
"We were facing eviction, on our way to a shelter," Marrow said.
Marrow received a favorable decision in 2016 and began receiving benefits.
‘Crashing halt’ diagnosis
Up until her diagnosis, Gunter was busy making a life for herself.
During her senior year at the University of the Arts in 2013, however, she started experiencing muscle weakness. It was getting harder to carry laundry up the steps.
When she lost vision in her left eye, she went to a neuro-ophthalmologist, who told her she had optic neuritis, an early sign of multiple sclerosis. He suggested an MRI, but without any health insurance, she couldn't afford one.
She applied for Medicaid right after graduation and was denied four times before the program was expanded in Pennsylvania in 2015 under the Affordable Care Act. In July that year, an MRI confirmed Gunter had multiple sclerosis.
"My life came to a crashing halt," she said.
She applied for disability benefits, and was denied after a physical exam that included touching her toes, lifting 10-pound weights, and walking. Officials didn't consider the MRI showing brain lesions associated with multiple sclerosis. As far as the government was concerned, if she could walk, bend, and lift she was able to work.
"We have determined that your condition is not severe enough to keep you from working," the letter said.
But Gunter's MS was quickly damaging parts of her brain that control balance, memory, and concentration.
Still, Gunter said she applied for eight jobs last year. None of them worked out. One required her to travel, which she can't do. Another was a transcription job. "Come to find out I wasn't typing fast enough," she said, noting that she would have been required to type 60 words per minute. "I was nowhere near that."
Finally, a hearing
By the time her appeal hearing came around, she was relying on a cane; she couldn't perform simple tasks like opening a jar of peanut butter.
On Dec. 13, Gunter walked into the tiny courtroom. The bench was empty; Judge David J. Begley was instead sitting in an office in Falls Church, Va., and looking into a livestream feed projected on a large screen.
Gunter was sworn in. When the judge asked when she last worked, Gunter blanked and said she couldn't remember. MS has affected her memory.
"I could feel the frustration mounting," she later said.
The judge then asked: What do you think prevents you from working?
As Gunter opened her mouth to answer, she muttered only a syllable before she began shaking with a seizurelike episode.
The room was completely silent, aside from the vibration of the chair as Gunter shook. After about 15 seconds, Begley asked Burdick to get Gunter's mother from the waiting area.
By the time she got there, Gunter had straightened herself up.
Gunter later explained that she has similar episodes about once a week — usually in a stressful situation.
During the hearing, Gunter told the judge about her inability to concentrate or focus. How her balance is so bad she can no longer go downstairs to do laundry, how she has to wash her hair in the sink because she is too scared of slipping in the shower. She can hardly cook anything because she is too weak to grip kitchen utensils.
About an hour into the hearing, Begley asked Dian Haller, a rehabilitation counselor whom the government contracts as a vocational expert and was on a speakerphone, to suggest what type of work Gunter may be eligible for.
Haller listed three jobs: bill account clerk, a screener/flash inspector for electronics and printer circuits, and a final assembler for optical goods. All three are sedentary and have thousands of job openings nationwide, Haller said. She didn't specify whether such jobs are available in Philadelphia.
Both the judge and Gunter's attorney asked technical questions about the jobs — such as how many unexcused absences are allowed or how many breaks a person can get if frequent seizures occur.
Burdick tried to show the jobs weren't realistic options. If someone has trouble holding a fork in her hands, she asked the vocational expert, can that person still do the jobs listed? Haller said that all require "basic handling."
The hearing ended shortly thereafter.
A decision may be several weeks, maybe months, away.
Until then, Gunter is taking it one day at a time. She can hardly leave the house without feeling sick and so instead of seeing family and friends, she scans Facebook. She has picked up crocheting. Anything to keep busy.
"I'm afraid I'm becoming isolated," she said. If she could work, she would, she says.
"If I can find employment where I can do it full time, I would gladly not need the disability anymore, " she said. "I would say, 'Thank you so much for your help. That was wonderful' and then give it up."