Long wait for disability payments

IOWA CITY - Heather Hix paid off her home equity line of credit in September, followed by a $6,000 credit card.

Up next were a pile of promissory notes. She sat at her kitchen table writing checks to those who loaned her money to help keep a roof over her head and food on her table.

She was thrilled.

“It was the best,” Hix, 56, said. “I had a smile on my face. I found myself saying ‘Yippee!' a lot.”

Hix was celebrating the end of six year fight to collect Social Security disability - a process that nearly bankrupted the Iowa City resident.

Hix was diagnosed with chronic fatigue syndrome (CFS) in 1999. The illness forced her to quit working as a registered nurse at Iowa City's Mercy Medical Center in the spring of 2003.

She applied for Social Security disability benefits and was denied. She appealed and was denied again. She had a hearing. Denied. She started the process from scratch.

Hix lived in constant fear and stress. She had no income. She emptied her savings account and cashed in her annuity pension. She sold personal affects, including the horse she owned for 15 years. She racked up credit card debt, and sought loans from family and friends.

“It was humiliating,” Hix said. “You are raised to be honest. You work hard, you pay into the system and then you get a form that says denied. They don't believe you are sick.”

About 9.5 million Americans -- more than 83,000 Iowans -- receive disability benefits, according to Social Security. The average monthly benefit is about $1,000. The weeks, months - even years - people wait to be approved for those benefits varies.

“It really is tragic,” said Mary Hoefer, an Iowa City attorney retained by Hix who specializes in Social Security Disability and Workers' Compensation cases. “A lot of times people lose their savings. They have their electricity turned off, they become homeless."

On top of that, she added, they're sick.

Hundreds of thousands of Americans sit in a backlog of disability claims. In Iowa, the average wait is 541 days for an appeal hearing. A hearing comes after a claim has been denied twice.

“It weighs on people,” said Jeffrey Berg, a Cedar Rapids attorney who practices Social Security law. “They don't have the distraction of going to work to take their mind off it.”

Some people get frustrated and abandon the process. Others wait. Some die waiting.

Nationally, about 30 to 40 percent of all claims for continuing and past due benefits are approved at the initial level. Fifteen to 20 percent of all reconsiderations are approved. Appeal hearings have a 50 percent approval rate.

Hix didn't fit any of those statistics. Her case went all the way to the fifth level - federal court. She doesn't know if her illness is to blame. Statistically, chronic and mental disorders are the most difficult to prove.

According to the Centers for Disease Control and Prevention, CFS is a debilitating disorder characterized by profound fatigue. An estimated 1 to 4 million Americans suffer from CFS, and at least a quarter are unemployed or on disability.

“The definition of the illness itself requires a level of disability,” said Kim McCleary, president of the CFIDS Association of America in Charlotte, NC. “It has to be a disabling fatigue. It also has to go on for a minimum of six months before it can be diagnosed.”

McCleary worked with the Social Security Administration to develop a policy ruling identifying CFS as a potentially disabling condition. While the policy helps CFS patients gain access to federal disability benefits, challenges still exist.

People seeking disability need medical records to prove their condition. If a person doesn't have a job or insurance, seeing a doctor to accumulate that proof is difficult.

"It's harder to add to a file if you can't see a doctor," McCleary said.

In May 2007, Social Security announced plans to eliminate the backlog of hearing requests. Additional funding led to the hire of new administrative law judges and about support staff to help process more hearings.

Then the economy collapsed.

“You have people who are marginal, barely able to work,” Berg said. “When the economy goes bad, they are the first to go.”

Disability claims rose 17 percent this year. The federal program expects to received an additional 350,000 initial disability claims in 2010. That number doesn't include the increased number of baby boomers now at the prime age for disabilities.

"I don't think people would sit around and not work if they were capable," Hoefer said. "I don't think people choose to live that way."

Hix didn't. She misses riding her horse. She wishes she had the energy to take her dog on long walks. She only goes out in public on days she feels good. Even a trip to the grocery store can tire her out for days.

The years of waiting for disability benefits to kick in took a toll on her health. Hix said she'll focus her energy on getting better -- not just living, but thriving.

"I look to my future as being a well person," Hix said. "I have to believe it -- I do believe it. I believe in miracles. I know that even if I didn't have a miracle and just got better like everybody else, that would be great, but I'm going for the miracle. I don't think I was put on this planet to be a sick person."

Had Hix not received disability payments and years of back pay in September, she wouldn't have been able to stay in her house much longer. Loans from friends and family would have carried her through to January.

“People need to be aware of the process,” Hix said. “They think ‘It's there if I need it,' but how long can you live on your resources while you wait?”