The long and winding road
Applying for disability benefits
From September/October 2003 Psoriasis Advance
When President Franklin D. Roosevelt signed the Social Security Act into law in 1935, he called it "a law which gives at least some measure of protection against the loss of a job and against poverty-stricken old age." That sounds pretty good, right? But for some people, especially those applying for disability benefits through the Social Security Administration, it can seem like less of a safety net and more of a tangled web.
Jeff, a Psoriasis Foundation member in Kentucky who wished to remain anonymous, spent two and a half years in and out of court trying to obtain disability benefits. "I was unable to work," says Jeff, 32. "It was obvious to me and those close to me, but it took two and a half years to convince the system."
Unfortunately, Jeff's story is not unusual. People with psoriasis and psoriatic arthritis have described the process of applying for disability benefits as "frustrating,"
"humiliating" and "impossible." Those who have been successful have said the best defense is a good offense. They stress the importance of being proactive, prepared and persistent.
The facts about disability
The Social Security Administration (SSA) runs two separate disability programs (along with other programs, including its most widely recognized program for retirement): Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI). SSDI is an insurance program funded by the Social Security taxes that workers and their employers pay. SSI benefits, on the other hand, are paid to people with low income and limited resources. The local Social Security office can assist people in deciding which type of disability is appropriate to apply for. The agency offers several tools on its Web site at www.ssa.gov to help people find out if they might qualify for benefits from any of the programs offered.
Both programs provide monthly payments to those who qualify as disabled, and the medical requirements are the same. A person must prove that they have an impairment that has lasted, or is expected to last, for at least one year, and the impairment must qualify as a disabling condition according to the strict SSA definition. The SSA considers someone disabled if they cannot do work that they did before and cannot adjust to other work because of a medical condition. For each major body system, the SSA maintains a list of conditions that automatically qualify as disabling. This does not mean that if a particular condition does not appear on the list, it is not covered. The SSA may determine that any condition is of equal severity to the medical conditions on the list.
Is psoriasis considered a disability?
Psoriasis is specifically mentioned in the SSA's list of impairments. The guidelines state: "Skin lesions may result in a marked, long-lasting impairment if they involve extensive
body areas or critical areas such as the hands or feet and become resistant to treatment."
The SSA does not mention psoriatic arthritis specifically (although it does list inflammatory arthritic conditions), which may be a reason why it has been difficult for many people with this inflammatory form of arthritis to be awarded disability. In the past, it has been shown that psoriatic arthritis is a milder disease than rheumatoid arthritis (RA). However, other recent reports suggest that psoriatic arthritis can be just as severe. A 2001 comparison of disability and quality of life in the two diseases found that although joint damage is significantly greater in RA than in psoriatic arthritis, function and quality of life scores are the same for both groups.
It is always important for applicants to document fully the physical, emotional, psychological and social impact the disease has had on their lives. Jeff was told that the pain from his psoriatic arthritis alone was not enough. It wasn't until the SSA sent him to a psychiatrist who diagnosed severe depression that his claim was approved. "You have got to make them understand how much it affects your life," he insists.
Jeff had to move back in with his parents after he was unable to work at his job as a grocery store manager due to the pain from his psoriatic arthritis. The stigma and stress of not working, coupled with the pain and depression, sent him into a downward spiral that culminated in his application for disability in 1998.
Finding an advocate
Many Social Security experts say that having a lawyer argue your disability case is not necessary. However, according to the National Organization of Social Security Claimants' Representatives, those who employ an attorney to represent them are statistically much more likely to win than those who go unrepresented. It is also legally necessary to have an attorney represent you if your case makes it all the way to court. Up until that point, some applicants are able to make do with the representative assigned by the SSA to handle their case. They are able to get their questions answered as they move through the process. Others, like Jeff, feel that having a lawyer is absolutely crucial. "I had probably the best lawyer in my area," he says, "and it took him two and a half years." He recommends contacting
a lawyer in the very beginning before even filing the initial application paperwork. "Find a lawyer and plan on riding it out for a few years," he adds.
Most lawyers who work on disability cases do so without any money up front, and they receive no fee if their client loses. Instead, they receive a percentage (to be determined by the SSA) of the total back benefits awarded. Generally, it is about one quarter of the settlement. The SSA has set guidelines stating that the amount can be no more than $5,300, no matter how long the case lasts.
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Tip Sheet
Reconstruct
If you have not kept a journal or detailed records of your treatment over the years, you will need to reconstruct it as best as possible.
Learn
Understand the medical terms relating to psoriasis and psoriatic arthritis and use them
correctly. The Psoriasis Foundation can help with educational materials.
Be specific
Describe what you cannot do as a result of your disease, and exactly how it impedes daily
functioning.
Show progression
Keep a detailed list of your symptoms, of physicians visited with dates and times, all medications (preferably with labels) you have taken, and photographs of your psoriasis at its worst.
Don't wait
Often people who apply for disability wait until their other options, such as retirement accounts
and savings, have been exhausted. This is not necessary. SSDI is not based on how much money you have in the bank. In other words, it is not necessary to "hit rock bottom" before applying for disability.
Don't give up
Remember, most people are turned down the first time they apply for disability benefits, and
many are turned down more than once.
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Resources
The Psoriasis Foundation can provide people with a letter explaining how psoriasis and/or psoriatic arthritis can be severely disabling that can then be used to prove their case with the SSA, and a packet of information designed to help them through the process. Call 800.723.9166 or visit www.psoriasis.org. The Social Security Administration, www.ssa.gov or 800.772.1213, provides answers to questions, instructional materials and tips.
The National Organization of Social Security Claimants' Representatives, 800.431.2804 or www.nosscr.org, provides a referral service to local licensed attorneys who specialize in disability cases. The Web site also contains links to other resources and answers to the most common questions about disability.
Fast forward
Roger Jacobs has an unusual story of moving through the process of applying for disability benefits rather quickly. When palmar-plantar pustulosis (a type of psoriasis that causes pustules on the hands and feet) became debilitating for him in July 2002, Jacobs spent some time attempting to obtain benefits from state and county agencies in Glendale, Calif., where he lives. However, to his surprise, less than three months after he filed with SSA in March 2003, the 44-year-old received his first SSDI check. Jacobs doesn't know why he was able to obtain benefits so quickly. "By all accounts, my case was an anomaly," he says.
Jacobs, a former freelance journalist and documentary writer and producer, did have a paper trail a mile long that included documentation of every doctor visit, psychiatrist visit and prescription between July 2002 and March 2003. He thinks this helped prove how much of a toll the disease had taken on every aspect of his life. "What one has to do is convince them [SSA] that moderate to severe psoriasis is a disability," he explains.
Jacobs also took pains to fill out his daily functioning questionnaire in detail. This form is one of the steps in the application process. He suggests reading the questionnaire carefully and thinking through your answers. "It is designed to trip you up," he says. "They ask the same question two or three times in different ways."
Long and laborious
Bill Krug's case is more representative of the average experience filing for disability. He was denied twice and eventually had to appear before an administrative law judge to appeal his case. The entire process, from when he applied to when he was approved, lasted about a year and a half.
Krug is now 68 and has been receiving disability for about five and a half years. He credits his favorable ruling to his thoroughness. "I dumped in all the details," he says of his
appearance before the judge, "and a picture really is worth a thousand words."
Krug was diagnosed with psoriasis in 1968. Lesions covered his limbs and scalp, and twice in the early 1980s he was hospitalized for severe erythrodermic flares. When he filed for disability in 1996, he had been out of work for about a year and a half. His benefits, when they came,
were retroactive to when he stopped working.
Krug stresses the importance of persistence, patience and information during the application process. "Get started immediately and don't ever give up," he says.
—Norah Barnard, Writer
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