(For SCILife Magazine, October 2008)

Seven months after applying for Social Security disability benefits, I received The Letter. The words “Notice of Disapproved Claim” stared at me in bold letters from the top of the form. In disbelief I read, “Although you do suffer from a spinal cord injury due to a motor vehicle accident, the evidence shows your condition has not resulted in disabling weakness, paralysis, or loss of control of your limbs.”

I became a C4/C5 quadriplegic on March 29, 2005. I have considerable paralysis on one side of my body and, at the time I received this letter, had great difficulty performing tasks of daily living.

These inabilities and deficiencies are clearly defined and documented in the weighty medical records forwarded to the Social Security Administration several times at their multiple requests. I knew they received each set of information, because I followed up meticulously with my doctors in an attempt to be as thorough as possible.

My emotions escalated from confusion to incredulity and, ultimately, fury. Had the SSA scheduled just one appointment for me with any of the “doctors” who reviewed my case, they would have found their claim of my physical wholeness to be utterly untrue. They would have seen the uncontrolled spasticity in my right hand, seen my left hand’s inability to grasp objects, seen my useless, ineffectual, dis-abled legs.

The problem, of course, was not my insufficient paralysis, but that first-time claim denial seems to be standard practice for the Social Security Administration. In fact, in 2005, according to government statistics, 63 out of 100 disability claims were initially deemed invalid. Remarkably, only 22 of those 63, or 35 percent, were appealed for reconsideration. And, during reconsideration, 19 of the 22 were denied again. As the process drags on, fewer and fewer people choose to appeal. It’s a numbers game, and the government is winning.

To literally add insult to injury, the average appeals process takes more than 500 days, according to a December 10, 2007 article in The New York Times. In fact, if a person must carry the disability review process from start to finish – from initial review through to a hearing with a District Court judge – it takes a whopping 1,760 days, according to the government’s own statistics. That’s almost five years!

The Social Security Administration is drastically underfunded, and faces office closings and employee layoffs at an astonishing rate. These layoffs, coupled with anticipated SSA employee retirement, mean only a 1 to 8 employee replacement ratio for field office employees, those who directly handle disability applicant cases.

In 2006 there were 2,134,088 new applications for SSDI benefits. By October 2007, there were already 1,844,898 new claims for the year.

The Agency has a new plan to increase the number of appeals judges by 150 from the existing 1,025 in an attempt to reduce the appeals backlog, but currently the plan is not financially realistic. President Bush has proposed a $9.6 billion budget for the SSA for the 2008 fiscal year, but the addition of these 150 new appeals judges will require $100 million beyond this figure.

Linda Fullerton knows all too well the damaging effect this appeals backlog can have on a person’s life. “After almost dying and continuing to battle several incurable diseases, I had to wipe out all my life savings and pension money due to the enormous wait for my SSDI claim to be processed,” she says. “I will never be able to recover from the financial, physical, and emotional devastation that was caused.”

On November 3, 1996, Fullerton bumped her head while getting out of her car. This freak accident, coupled with a series of missed and misdiagnoses, led to the serious illnesses and related brain surgery that left Fullerton permanently disabled, and in need of disability benefits.

When she applied for SSDI, however, she says she “discovered that the Social Security Disability claims process is currently structured to suck the life out of its applicants in hope that they give up or die trying.” Fullerton found herself not being able to afford health insurance, medicine, and household necessities while her health continued to worsen. Unfortunately, the SSA considers one to be a dire needs case, a determination that may speed the appeals process, only when foreclosure, eviction, or utility shut-off are imminent.

She wrote her elected officials – all of them, including the President – to plead her case. Few responded, and the ones who did offered little help. “It was totally appalling and unacceptable to me that never once did they say that they would do anything to try and correct the flaws in the system.”

So she took matters into her own hands. Fullerton used the Freedom of Information Act to demand copies of all paperwork used in determining her disability status. She discovered serious flaws and omissions in her file, requested a pre-hearing review on the grounds of misconduct and additional physical evidence, and was eventually granted her claim.

But the ordeal has had serious lasting effects. “Even though I won my case, I continually deal with enormous stress and face the looming threat of bankruptcy and homelessness due to the cost of my healthcare and basic living expenses,” says Fullerton. “Even though I am now receiving my monthly SSDI checks benefits, they are nowhere near enough to live on for the rest of my life. I still do not qualify for any public assistance programs.”

Now, helping others navigate the often confusing and decidedly difficult maze of SSDI/SSI appeals process has become Fullerton’s crusade. Her Social Security Disability Coalition was founded in January 2003, and is a national grassroots organization offering free information and support, with a focus on reform. The SSDC website (www.groups.msn.com/SocialSecurityDisabilityCoalition) is a clearinghouse of information for those battling a disability claim denial, from codes and terms definitions, to online forms, to Social Security statistical data. “It provides comprehensive information and resources to assist the disabled on how to file a claim and have the best chance of winning their case no matter what phase of the disability claims process they are at,” says Fullerton.

“I wanted to use what I learned from my horrible experience with the SSDI program to help those still struggling to get their benefits by sharing information, and trying to get legislative reform of this important benefits program,” she says.

Fullerton has written legislation called the Fullerton-Edwards Social Security Reform Act, which calls for, among other things, the removal of wait times for eligibility, more federal funding for the SSA, and easier determination criteria, which should all speed the time it takes to process a disability claim.

In the meantime, Fullerton’s goal is to empower people with disabilities to become their own best advocate for benefits by taking as active a role as possible in the claims process. Among her most important tips: communicate as much as possible with the SSA, get copies of all examiners’ notes and medical records for your own files, be sure to mention all physical and mental problems you have, and be sure your doctors are supportive of you and your disability claim.

Fullerton is quick to point out that disability does not discriminate, and can happen in the blink of an eye. “Studies have shown that most Americans have about two weeks of financial resources to live on.”

She asks, “How long could YOU survive with absolutely no income, if you got sick or hurt and could no longer work?”