PHOENIX - Adria Howard doesn't understand why her application for Social Security disability payments was denied without explanation.
The mother of two from Tolleson, Ariz., had worked until recently, when she was diagnosed with breast cancer that had spread to her back, and the pain made her job impossible. Now, she is preparing an appeal, and statistics show it could take nearly a year to get a hearing with an administrative-law judge. Meanwhile, her bills stack up.
"With chemo and everything, at this point, I cannot work," she said.
Sarah Burkhart of Chandler, who suffers from a neurological disorder, waited 2 and one-half years for approval of her disability benefits. She had to move back in with her parents during the long process.
The Social Security disability program, which is funded by workers' payroll deductions, is intended to help people who get sick or injured and no longer can work.
As the nation ages and effects of the recession linger, millions are applying for disability benefits, and Social Security can't work through the claims fast enough.
Pressure is building on the system because aging Baby Boomers, many still in the workforce, are more prone to injury as they get older. The recession also caused many who were hanging on to jobs despite chronic medical issues to apply for benefits when they lost those jobs.
Most applicants are rejected in their initial written request because they fail to supply enough evidence of a disability. After two rejections, their next step is an appeal before a judge. Applicants, on average, now wait 10 and one-half months in Arizona for those hearings. Judicial approval rates vary greatly across both the state and nation.
The average wait time for Arizonans who apply for benefits is 316 days, according to the Social Security Administration. That is down significantly from 450 days two years ago thanks to an increased effort to clear the oldest cases, but still longer than acceptable, say Social Security Administration officials and people who have waited through the application process.
In Arizona, about 8,900 people are waiting for a hearing to determine if they will receive benefits. Nationally, about 750,000 await a hearing.
The Social Security Administration has added staff and increased automation to cut the backlog of people seeking hearings and to reduce overall waiting time, said Lowell Kepke, a San Francisco-based spokesman.
But just as the administration was making its effort to reduce the backlog, the recession pushed several thousand more people nationwide to apply for benefits.
"I will tell you, 316 days is still too long (to wait for benefits)," Kepke said. "What I can say is we had the spike in requests and still made progress."
A key reason for the long delay between application and approval of benefits is a safety mechanism built into the program since its inception in the mid-1950s. To ensure applicants aren't gaming the system, the application is complex, requiring thorough documentation and detail.
Wade Pennell, another disability-benefits recipient, said it is all but impossible to collect without the help of a lawyer.
And now the program faces another challenge. It's growing so fast that the Congressional Budget Office anticipates it will be insolvent by 2016, with more obligations than revenue, unless lawmakers change the payouts or how the program is financed.
Those who have applied for benefits because of a disability describe the system as complex and overburdened.
Burkhart was diagnosed in 2008 at age 28 with a complex neurological disorder and genetic joint disorder. The neurological disorder affected her heart rate and caused fainting. She had to quit her office job, and struggled with finances while fighting for, and winning, disability benefits. She waited 2 and one-half years.
In the meantime, she lost the lease on her house, racked up debt and moved in with her parents even though she had been in the workforce for eight years.
"It was really a lot of work," she said. "It was a lot of paperwork, which is hard when you are sick."
Burkhart eventually hired a lawyer to help her. Even though she worked as a bookkeeper by trade, the application was daunting.
"That is a challenge for a lot of people," she said. "I was going to the doctor like once a week, and requested copies of the tests and statements from the doctor, and would send them to (the lawyer) right away."
More than a year after her diagnoses and quitting her job, Burkhart was able to manage her chronic illness enough that she began working about 15 hours a week from home for the same employer she had before.
Two and a half years after applying for benefits, she received a check for back pay for the period of work she missed.
The average monthly benefit is about $1,100 a month, and Burkhart said she received less than that because of her short work history.
The money helped her pay down some of the credit card debt she accumulated, but not everything.
"It definitely would have been a lot more helpful if I were able to get the benefits when I needed them," she said.
Despite the painstaking application process, about 11 million people in the U.S. collect Social Security disability benefits, including spouses and children of beneficiaries.
"It seems the system is set up to require a lot of people to appeal," said Amina Kruck, vice president of advocacy programs at Arizona Bridge to Independent Living, a non-profit organization run by people with disabilities that assists other people with disabilities.
"They have a list of disabilities that are a slam dunk, like being a quadriplegic or having kidney failure. If your condition is not on the list, it's harder to get on," Kruck said.
Conditions such as leukemia, stomach cancer and amyotrophic lateral sclerosis, or Lou Gehrig's disease, are on the so-called "compassionate allowances" list.
Other conditions can qualify for benefits, but can be extremely difficult to document sufficiently to receive benefits, she said. Those applicants, for example, might be able to complete ordinary tasks such as feeding and dressing themselves that are addressed in the initial eligibility screening, but not the more complicated tasks required for work.
"A lot of the questions on the application are actually physical things," Kruck said, adding that mental-health patients have more complex issues that prevent them from working that are not addressed in the screening.
"Thinking, memory, following instructions, those kinds of things, getting along with others ... those come up with people with mental-health disabilities or brain injuries," she said.
Other ailments, such as back pain, are not guaranteed benefits approval. Younger patients must prove severe conditions, with medical evidence, that they are injured. And more importantly, they must prove that they are prevented from doing any type of work, not just the job they held previously.
Financial struggles are common as the benefits application process drags on. Typically, those who are sick have lost all of their income, which can force them to rely on family help or other social services.
Howard, 39, of Tolleson, recently diagnosed with breast cancer, is finding out how difficult it is to navigate the application.
She applied for disability benefits in August when the cancer, which had spread to her back, began to cause her too much pain for her to continue working as a phlebotomist.
"They denied me," she said, adding that the rejection came with no explanation. "I don't understand. (We) are working on doing an appeal. There is no way I should have been denied because I have Stage 4 breast cancer."
In the meantime, her bills are mounting. She cares for a 13-year-old son and 11-year-old daughter, and the son receives about $700 a month in Social Security aid for ADHD, she said.
"He does get a monthly check now, and benefits to see a doctor and whatever else is needed for him, but it was a long battle for that, too," she said.
Fixing the backlog
To address the backlog, the Social Security Administration is working to streamline the application process with changes such as working with health-care providers to send medical records electronically.
"Wherever automation can help, we are doing more automation," Kepke said.
The backlog is only part of the struggle. The pending insolvency of the entire program overshadows it.
Since 2009, the disability program has been paying out more than it collects. In 2011, total outlays were $128 billion, while the program's revenues totaled about $94 billion.
The much larger Social Security retirement program also is headed for insolvency, but the disability program is going to hit that mark about 20 years earlier than the retirement program, making its need for reform more urgent.
The programs are funded by the Federal Insurance Contributions Act, with money deducted from paychecks.
To remain solvent, the disability program either will need to reduce benefits, raise the FICA deduction, or get an infusion of funds from elsewhere in the federal budget. Because the program can't run at a deficit, benefits automatically will be cut to match collections in four years if no changes are made.
By the numbers
-- The number of applications for disability benefits has surged from 1.5 million in 2001 to 2.9 million in 2011. In 2007, before the full impact of the Great Recession, applications numbered 2.2 million.
-- In 2011, 2.6 million people nationally joined the ranks of those receiving retirement benefits. Nearly 1 million were added to the disability rolls.
-- Just 4% of people who entered the program during a 10-year period from 1996 to 2006 eventually left the program to return to work, one study found.