Missouri woman with rare disease fighting for disability
The tumors and cysts that blinded Barbara Sales in her left eye and, years ago, lodged in her brain have robbed her of far more than her sight and memory.
“I have photos of her face all bruised up because she got up in the middle of the night, had a seizure and fell into the dresser,” said her daughter Alicia Kroll, 25, who is a surgical nurse.
Three seizures forced Sales, 53, a former Lenexa resident, to lose a job she’d hoped to get full time. Her maladies and medications, treatments for a rare genetic disease, have made her short-term memory so faulty that she once drove 100 miles in the wrong direction before realizing her mistake.
“She’s not normal, that’s all there is to it,” said her uncle, Charles McVey, 81, of Raytown.
Despite these difficulties, one question has for four years consumed the thoughts of this college-educated woman who worked full time for 25 years while raising her daughter as a divorced, single mom.
Why is it taking the government so long to decide whether she is eligible to receive Social Security disability?
“This is not right,” Sales said, coming to tears. “This is not what we pay into Social Security for. This is not the American dream. This is certainly not what I went to college for.”
Sales’ situation goes to the heart of problems that have plagued the Social Security Administration for years: Underfunded and overwhelmed, it operates with a workforce that has remained all but flat for more than 20 years in the face of a rising population and an explosion of disability applications.
“The situation is really bad for the claimants right now. … The bottom line is inadequate funding of Social Security,” said Lisa Ekman, director of governmental affairs for the National Organization of Social Security Claimants’ Representatives. It is an association of attorneys representing people with disabilities.
“Eight thousand people died during fiscal year 2016 who were waiting for a (disability) hearing,” Ekman said. “That’s 23 people a day, almost one an hour to get a hearing. … We see people who lose their homes. We see people who are evicted. We see people who can’t afford to pay for medications, who become very debilitated while they wait. It creates people who are homeless.”
Some good news came this month when union officials representing federal workers were told that despite a federal hiring freeze, the Social Security Administration would be allowed to hire 100 extra workers to authorize benefits.
“One hundred new hires nationally won’t make a huge dent, but it is certainly better than nothing,” said Benji King, union steward for the American Federation of Government Employees Local 1336, which is based in Kansas City and represents some 2,200 employees in four states. “It is a recognition that SSA is understaffed and needs people.”
Numbers, experts say, tell part of the story.
Social Security operates two prime disability programs. One is SSI, or Supplemental Security Income. It is a “means tested” program, meaning it is based on income. It currently pays a monthly benefit averaging about $542 to some 8.3 million recipients who are blind, disabled, adults or minors and who have little to no income.
The somewhat larger program is SSDI, or Social Security Disability Insurance. It pays a monthly benefit to individuals (and certain family members) who were substantially employed — and, as such, have paid into the federal disability insurance program — and who meet a strict standard of disability.
Some 10.5 million people currently draw a monthly SSDI check averaging about $1,030.
The problem: An overwhelming number of applications for disability — about 2.3 million in 2016, up from 1.7 million in 2002 but down from a peak in 2010 — flow into a system in which 77 percent of initial claims have, over the last decade, been denied. Moreover, the backlog of decisions on first-time claims is massive.
2.3 million people across the U.S. applied for Social Security disability in 2016
23 percent of applicants win approval with their initial filing
1.1 million cases were backlogged in 2016, waiting to be heard by a judge
513 days, on average, to get a decision from a judge at the Kansas City office
When fiscal 2017 began in October, the number of first-time claims that had not been processed from the year before stood at more than 560,000, according to the Office of the Inspector General’s semi-annual report to Congress.
The backlog of cases being reconsidered, waiting to be heard by an administrative law judge, ballooned from 700,000 in 2010 to more than 1.1 million cases at the end of June 2016, the report showed.
In that same period, the average processing time it takes to see and get a decision from a judge has stretched from 426 days to more than 530 days. (At 513 days, Kansas City is the best among the nine offices in its region, which include Topeka; Omaha, Neb.; and West Des Moines, Iowa. St. Louis, at 643 days, is the worst.)
Even then, for those who persist, the odds of being approved by a judge are worse than a coin toss — 44 percent nationally. In Kansas, it’s 40 percent. In Missouri, 38 percent.
“It’s always been the case that’s it not easy to get benefits,” said Edward Berkowitz, a professor of history who writes on social welfare policy at George Washington University.
The reasons are many, he said, having to do with politics and personalities, policies as well as perceptions, including one on fraud that, fair or not, is long lasting.
“People have always complained,” Berkowitz said, “about how hard it is for worthy people to get benefits, but how easy it seems for malingerers to get benefits.”
The highest obstacle to receiving benefits, experts said, is meeting Social Security’s strict standard of disability.
“The definition of disability under Social Security is different from other programs,” Jewell Colbert, the administration’s regional communications director in Kansas City, said by email. “…While some programs give money to people with partial disability or short-term disability, Social Security does not.”
For Social Security disability, he said, people must be unable to work because of a medical condition that’s expected to last at least one year or result in death.
In determining eligibility, Colbert said, Social Security looks at multiple factors including the nature of the disability or disease and one’s medical history, age, education and work experience. Does the person have the capacity to work at another job?
If someone is working now and making more than about $1,130 per month, Social Security generally does not consider him or her disabled.
Social Security also keeps a list of “disabling ailments.” Those with an ailment not on the list will have a harder time winning approval.
It’s a process, Berkowitz said, that is highly subjective. A manual laborer with an eighth-grade education and a serious muscular back injury, he said, is more likely to be approved than a worker, say, with an advanced degree who could be trained to do something else.
Younger workers, he said, are more likely to be turned down than workers ages 50 and up. Just as the Americans with Disabilities Act has transformed workplaces, it’s also transformed attitudes about what individuals with disabilities can achieve.
“Who is to say that someone with an impairment is disabled?” Berkowitz said. “The classic example is someone gets infantile paralysis and (as Franklin Roosevelt did) becomes president of the United States. Someone else gets infantile paralysis and is out for life.”
While judges can be tougher or more lenient in awarding disability, politicians can be the same as priorities and agendas change.
“The government really cracked down when Ronald Reagan was president,” Berkowitz said. “Then, in 1984 (before the start of Reagan’s second term), that turned around and it became easier to get benefits.”
Barbara Sales’ story
Barbara Sales didn’t think getting benefits would be easy. She just didn’t think it would be wrenching.
“The whole process stinks,” she said recently. “And I’m putting it mildly.”
The way Sales sees it, she paid into a system for more than 25 years — longer if she counts high school.
“I worked from the time I was 15,” she said.
A graduate with a bachelor of science degree from Central Missouri State University in Warrensburg (now the University of Central Missouri), Sales went on to a series of mostly office or sales jobs.
They included stints at Purdue University in West Lafayette, Ind., and at Alcoa, the aluminum manufacturer, also in Indiana. Back in the Kansas City area, she worked from 2003 to 2010 for two for-profit colleges, National American University and Grantham University.
“Growing up, my mom was really independent,” said Sales’ daughter, who now lives in Houston. “She worked in business. She had an office job 9 to 5. She paid all the bills on her own and everything.”
Sales said that if she could work, she would. But a rare hereditary disease has complicated matters.
Sales suffers von Hippel-Lindau syndrome, a genetic disorder that affects about 8,000 people in the United States. It is not included on Social Security’s list of ailments.
Its primary hallmark: tumors and cysts in tissues and organ systems all over the body. Most of the time, they are not cancerous, but occasionally they can be, especially in the kidneys. Even when they’re not cancerous, the masses can wreak havoc, as they have with Sales.
In the brain and spinal cord, they can cause headaches, vomiting, loss of muscle control, persistent dizziness and seizures. In the eyes (Sales estimates she’s had more than two dozen eye surgeries) they can cause blindness.
“Some people will have their eyes removed,” said Hadley Wyre, a urologist at the University of Kansas Health System who works with von Hippel patients, having operated on them for repeated cases of kidney cysts, tumors and cancers.
The masses can grow inside the pancreas, in the genital tract and in adrenal glands, where they can prompt surges in blood pressure, heart attacks or strokes.
That the disease can be a killer is undeniable. For Sales, the knowledge is intimate.
Complications from von Hippel killed her father, Robert Siercks, when he was only 41.
The disease killed her sister, Vicky Siercks Prince, when she was 42.
It killed her aunt Rae Donna (Siercks) McVey — her uncle Charles McVey’s late wife — at age 59 in 1998. And it also killed her first cousin, Charles McVey’s daughter Rhonda McVey, in 2001, when she was only 41.
Barbara Sales’ daughter has also been diagnosed as having it.
After 2010, Sales started a temporary job that she hoped might turn permanent. But then she suffered three seizures, including one while shopping at Wal-Mart.
“I didn’t get hired,” she said.
Her salary and savings dried up. She lost her Lenexa house to foreclosure and went on Medicaid and food stamps. Family members moved her to a cabin in Calhoun, Mo., where a friend pays her to occasionally pick up around his house.
Sales said she used to bring in about $43,000 a year. No more.
“I live on $200 or $300 a month,” she said.
Sales’ initial application for disability was passed over in 2012 and denied by a judge in 2013. Some two years passed before she tried again and, again, she was denied by a judge in July 2015. The next time she appealed, she tried with an attorney, who backed out of her case in November 2016 just before her scheduled hearing.
The hearing was reset. In late April, with a new attorney, she is set to go before a judge in Springfield.
Sales is hoping for the best. Her attorney gets paid (25 percent of the amount she is awarded, up to $6,000) only if she wins. Winning could mean receiving a check that includes months or even years of disability payments dating as far back as the first time she applied.
Between now and then, Sales has another worry: Doctors recently found a fast-growing cyst on her right kidney with cells that may be cancerous. Her surgery is scheduled at University of Kansas Hospital on March 24.
“I just have never wanted to be seen as a pity party,” Sales said. “I never thought I’d be getting food stamps or Medicaid. That’s why I put myself through college.”
Her ankles are so swollen with fluid she has a hard time standing and walking.
Her short-term memory has withered. Her uncle thinks there are signs now of some early dementia.
Sales doesn’t know what will happen at her disability hearing. Her uncle is convinced that his niece not only is incapable of working, but also, given her problems with memory and seizures, that no one would hire her.
“I wouldn’t hire her,” McVey said.
But if she is ultimately told by a judge that she’s not too disabled to work, Sales said her response will be direct.
“Doing what?” she said. “Tell me. What do you think I can do?”