Getting disability payments can be a fight to the death

Portland’s Social Security office has some of the nation’s longest delays for benefits, and in the years-long waits some die before seeing a dime

Patricia Heimerl landed her first job in high school, bought a house at 22, and worked the last eight years of a long office career at Intel. She paid her bills, built a retirement account and, like most Americans, watched as Social Security took its cut from every paycheck.

Play the interactive game

Part of those deductions went to an insurance fund that pays benefits to people who become too sick or injured to work. Heimerl couldn't imagine that would ever mean her.

Then it did.

Doctors diagnosed her with fibromyalgia, which causes chronic muscle pain. Heimerl couldn't hold a job.

In January, the Social Security Administration decided that the 55-year-old McMinnville resident was disabled and approved her for benefits.

Here's what it cost her: six years.

Six years fighting Social Security's delays. Six years dealing with lawyers and paperwork. Six years burning through savings and selling her house to survive.

"It's something we've all paid into. So it should be there, if you are in need of it," she says. Instead, "the system you have to work with is a nightmare."

Fifty-two years ago this week, President Eisenhower signed a law creating the Social Security Disability Insurance program, which was intended to help people survive after infirmities drive them from the work force. But that well-intentioned plan has become a national quagmire for people like Heimerl, who suffer needlessly during interminable waits for a check.

More than 762,000 Americans sit in an unprecedented backlog of disability claims. Delays have hit all-time highs -- the result of shoestring budgets, bureaucratic incompetence and poorly executed reforms.

The crest of baby boomers has reached prime age for disabilities and now slams Social Security offices. About 2.5 million Americans a year file disability claims, including many with little or no work history seeking Supplemental Security Income. Social Security must examine each one to ensure only the deserving get benefits.

One step of the process alone -- getting an appeals ruling after a claim is denied -- now takes an average of 512 days across the nation. The waiting times, which declined in the 1990s, have nearly doubled in this decade.

As the agency's top official, Commissioner Michael J. Astrue, told The Oregonian, "It's been going seriously in the wrong direction."

In Portland, where the local Social Security hearings office posts some of the nation's longest delays, the average appeal drags on 669 days.

Meanwhile, people like Heimerl are left in ruins. Many die waiting.

"They want to make it as complicated as possible so that we give up or die trying," says Linda Fullerton, a 52-year-old disability activist from Rochester, N.Y., whose Web page collects what she calls horror stories from the Social Security backlog.

Social Security officials, who decline to discuss individual cases, say they work at a furious pace to reduce the waiting times and will lessen the backlog. Astrue acknowledges it will take years to bring the system under control. Meanwhile, reforms have stumbled because Congress hasn't spent enough money to curb the delays.

"It's not what most people foresee for themselves," says Sylvester J. Schieber, chairman of the Social Security Advisory Board, an oversight agency.

"You're caught in a time warp, still in the middle of an appeal, tearing your hair out, your conditions worsening and you're staring death in the face. This is the epitome of helplessness."

If you think this will never happen to you, you're not alone.

No one in this story thought it would happen to them, either.

A slide into poverty

In 1991, Robert Harris was fit enough to dive into a chilly and surging Fanno Creek to rescue a stranger who had driven his car into the water. Emergency officials said Harris saved the man's life.

Harris now looks like a question mark when he walks. Social Security acknowledges his degenerative disc disease has impaired him, but officials say Harris, 48, can still do some work and is not eligible to collect benefits.

His case has followed every twist in the system for six years -- through layers of appeals -- and now is in federal court. He may never see a dime.

About 65 percent of people who first apply for Social Security disability are turned down, and most of those who ask to have their cases reconsidered are denied again.

Along the way, 1.1 million claimants give up each year. The majority who fight on -- about 500,000 -- eventually win their claims.

But to do so, they have to request an appeals hearing before one of Social Security's administrative law judges, who have the power to award benefits. This sends applicants into a complicated, often crushing world of lawyers and medical experts.

And it's here that the long waits really begin.

Those who enter the appeals process often bring claims for pain, mental health problems or injuries that aren't easily diagnosed or proved. But those complexities don't explain all the delays -- most files sit in the backlog just waiting to be reviewed.

Harris spent his life savings of $3,000 and lived in his van at an Interstate 5 rest area for more than two years. He married in 2006 and now lives in a Salem trailer park. Harris and his wife, also unemployed, survive in part on the goodwill of friends and family, as they await word from Social Security.

"I'll never be able to work again, no matter what they decide," says Harris, a former window glazier. "I want to work. And I've been made to feel like a cheat and a beggar."

When people take their claims to U.S. District Court, as Harris has, federal judges about half the time send the cases back to Social Security for further review or order that benefits be paid.

That's what happened to Laurie Wells. Her case went to a federal judge -- twice -- before Social Security in June ruled she had been too disabled to work since July 2001. She struggled through the system nearly seven years.

"They just kind of stand there and watch you suffer," she says. "They treat you like a criminal."

Wells traveled the world during a 14-year career in the U.S. Air Force and Oregon Army National Guard. Tall, lean and energetic, she climbed to the rank of sergeant, earned a small-arms expert rifle ribbon, and served at bases in the U.S., Korea and the United Kingdom.

Over the last 15 years, doctors have diagnosed her with scoliosis, degenerative disc disease, fibromyalgia, depression, migraines, reactive airway disease, asthma, osteoarthritis, affective disorder, anxiety disorder and hypothyroidism.

"Pain," Wells says, "shows up in my dreams."

A 51-year-old single mom who lives in the Portland suburbs, Wells will get back benefits and a monthly check as long as she's disabled. It's not clear how much she'll draw. What is clear to Wells is that some of her back benefits will vanish before she sees a penny.

She knows Social Security won't pay the first five months of disability benefits -- a time known as a "waiting period." Wells also knows she'll have to pay back a portion of her state welfare money. And she knows her lawyer will get 25 percent of her back benefits -- a ceiling established by federal law. Lawyers can also charge for expenses, which in her case will be about $1,000.

"Hopefully, I'll have something left over," she says.

The delays drove her into poverty. Wells says she gets a monthly welfare check of $511 and food stamps worth $235. She pays $59 a month for a two-bedroom unit in a subsidized apartment, within walking distance of the clinic that treats her.

Wells says she hasn't been able to explain to her 13-year-old son how she proudly served her country for 14 years and now can't afford to drive a car. She said she tells him, "When I finally get my money, we can live like normal people."

"I don't think he understands why it's such a struggle."

Work works against you

More than 7 million Americans now collect benefits from Social Security's disability insurance program, drawing an average monthly check of $1,004, according to a recent sampling by the agency.

To qualify for benefits, you must prove your medical problems prevent you from any "substantial gainful activity" (defined as an average income of $940 a month) and must show your disability has or will keep you out of work for 12 months or more.

"People expect that after they have worked all their lives and paid into the system, their disability benefits will be there when they apply," says Linda Ziskin, a Lake Oswego attorney who handles disability appeals in federal court. "Instead they find that they may be expected to go back to a job they held 15 years ago or take a job that they have never done before."

Everyone interviewed for this story said they sought disability payments reluctantly and would prefer to work.

In many cases, people seeking benefits want to work. But when they try, it can work against them.

Randal Darby's customers loved him. At his Portland coffee shop, Hollywood Espresso, he welcomed people who never felt at home at Starbucks, high school kids shunned by peers, and others just looking for a haven. "Hollywood Espresso," went his motto, "Where You're the Star."

Darby had been forced to give up on his first love, teaching, because of his Type 1 diabetes, which became disabling when he grew disoriented. He told others he thought his condition cost him jobs working with children.

To keep working, he opened his shop in 1993 and built a loyal clientele. As his diabetes grew worse, his hands and feet often went numb. He dropped cups and dishes and couldn't feel when hot surfaces burned his skin. Customers sometimes found him in a near-coma.

In 2002, Darby filed for disability benefits. He sold his coffee shop toward the end of 2003. But the next year, a Social Security judge said Darby's business proved he had "substantial gainful activity." In reality, Darby saw a profit of only $1,150 in 2003.

The coffee shop had been Darby's only lifeline to the world, says Mark Falby, his companion of 25 years. "He would say, 'They want people to give up. They want you so downtrodden you can't do anything.'"

Darby died April 28, 2006, of complications from his diabetes. He was 48.

Social Security last year granted his disability claims, acknowledging he had been unable to work for the last two years and 10 months of his life.

"He was dead," Falby says. "His disability killed him. They couldn't refute it that last time."

The benefits went to Darby's mother, Esther, who waited and waited for the money. She went to the local Social Security office from time to time to ask about the delay. And she recalls asking them, "Are you waiting for me to die, too, so you don't have to pay the rest of it?"

She says a final benefits check for $5,817 arrived in her bank account last month.

"An unjust system"

Darby kept working through his disability because he could. Salvador Santa Cruz worked because had no choice.

Santa Cruz worked up to 12 hours a day, taking only Sunday afternoons off with his family. The $8.25 an hour he earned at Cascade Dairy in Parkdale barely supported him, his wife -- childhood love Eufrasia -- and their four children.

Eufrasia Santa Cruz says her husband felt lucky to work. He had moved from Mexico, gained U.S. citizenship in 1998, and honored the opportunity the United States gave him. "He saw work as important," his wife says.

Despite his hard work, Santa Cruz usually could rally at day's end to play with his kids. One day in June 2004, he complained of exhaustion -- what his wife called "a different kind of tired."

He soon had coughing fits that didn't stop. Doctors eventually found he suffered from a rare and aggressive form of lung fibrosis. His physician said Santa Cruz could no longer work, even though he tried to until May 2005.

He filed for disability two months later, and Social Security rejected his claim. Fourteen years earlier, Santa Cruz had worked building pipelines. The agency told him he was healthy enough to do it again.

"As you retain the ability to perform the type of work you have previously done," one denial letter said, "your claim cannot be allowed."

Eufrasia Santa Cruz says her usually gentle husband wanted to rip the denial letters to shreds.

"He would say they took the money for Social Security out of his paycheck without a word, but when he needed it, there is no help," she says. "They make you fight for it."

The family survived on welfare and food stamps, often using one credit card to pay the bill of another. Friends and family helped, and his employers generously allowed the family to keep living in a house owned by the dairy.

In February, 2 1/2 years after his claim had been denied, a Social Security judge concluded Santa Cruz was indeed too sick to work. The judge ordered the agency to pay him benefits that came to $8,358 after attorney fees.

By then, Salvador Santa Cruz was dead -- killed by respiratory failure on March 3, 2006, at 35. The money went to his family.

"We don't understand it at all," Eufrasia Santa Cruz says, her children sitting quietly on the sofa. "It's an unjust system."

Delayed to death

Problems with muscles, joints and bones are among the top diagnoses of people who receive benefits. But the No. 1 reason is mental health problems. More than a quarter of all beneficiaries suffer mental disorders, according to Social Security.

Many people say they didn't have mental health problems -- until they started fighting Social Security. Several interviewed by The Oregonian spoke of feeling so desperate they wanted to die.

Sharyn Hames worked as a temp and administrative assistant in Idaho, but many people knew her best as a spirited cocktail waitress, working shifts on the side to make ends meet. She had to give up all of her work when pain from fibromyalgia and rheumatoid arthritis overwhelmed her, and she filed for disability in November 2003.

Social Security rejected her application, and she waited two years and one month for a hearing. After she and her husband moved to Oregon, an agency judge rejected her claim, saying her fibromyalgia didn't stop her from working six hours in an eight-hour workday.

"Even if she could," says her husband, Rodney Hames, "she never knew day to day if she would be well enough to work. They didn't take that into account." Unable to keep a regular schedule, Hames couldn't find steady work.

She had a history of depression and anxiety, and her despondency grew as her list of medications hit 16. Rodney Hames' job provided good health benefits, but his wife's prescriptions and doctors' visits still averaged $600 a month -- about what she expected to draw in benefits, her husband says.

"She loved to work and loved being independent," says her sister, Stephanie Silva. "She would sometimes say she wished she were dead so she wouldn't have to deal with all the bull any longer." Other times, Sharyn would tell her husband someone should take her out to the back pasture and shoot her -- but then would assure him she was just joking.

On Thursday, July 5, 2007, she returned to their Newberg home after treatment for arthritis at Oregon Health & Science University, depressed because doctors had given her a poor prognosis.

"She constantly worried she was a burden on me," Rodney Hames says. "I told her not to worry, that I loved her and just wanted her to get better."

The next day, Rodney Hames kissed his wife goodbye and went to work. Sharyn took a 9mm Ruger from the nightstand, put the handgun to her head and pulled the trigger.

Her death was ruled a suicide. Sharyn, 43, didn't leave a note.

Sharyn's claim had languished nearly four years. Her attorney sent Sharyn's death certificate to Social Security. Less than five weeks later, the agency approved her claim -- but only if her widower would cut a deal and give up a year's worth of her benefits.

Rodney Hames thought it was an insult to his wife, but he finally agreed. He says he received $10,500, after paying attorney fees.

"I was just so lost, feeling so much guilt," he says. "I couldn't fight them anymore."

Staff photographer Faith Cathcart contributed to the reporting of this story.

Read More