Social Security Disability Programs for Those Suffering from Scleroderma

The following questions are those most frequently asked by persons who suffer from scleroderma, and who are in search of disability benefits from the Social Security Administration.

What does the term "disability" mean to the Social Security Administration?

For purposes of entitlement to disability benefits, the term "disability" is defined as the inability to engage in any form of substantial gainful activity (e.g. work) by reason of any medically determinable physical or mental impairment which has lasted (or can be expected to last) for a continuous period of 12 months or more, or which can be expected to result in death. It is important to note that the Administration's definition of "disability" precludes a person from being able to do any work, not just the work they have done in the past. A warehouse worker who has hurt his back, for example, may not be able to continue working in a warehouse (which requires heavy lifting), but he may be able to sit at a table assembling small items. The disability must also be "medically determinable," meaning that symptoms alone will not justify a finding of disability. If a person's hands shake, objective medical evidence of the existence of a condition which would cause a person's hands to shake must exist.

What programs are available to disabled persons under the Social Security Law?

The Social Security Administration administers two programs which provide financial benefits to disabled persons. One is the Social Security Disability Insurance program, also known as the "Title II" or "DIB" (for "Disability Insurance Benefits") program. The other is the Supplemental Security Income program, also known as the "Title XVI" or "SSI" program. Although there are two programs, the standard for determining if a person is disabled within the meaning of the law is the same for both programs. Accordingly, people often apply for benefits under both programs. Under certain circumstances, a person may qualify for both programs. An individual suffering from a medical disability may also qualify as a widow or widower. Under these circumstances, the earnings of the deceased spouse are used to determine the benefit amount.

What are the requirements for the "Title II" or "DIB" benefit program?

This program is designed for workers who have contributed to the Social Security fund during their working lives. It works like a disability insurance policy. In fact, that is exactly what it is. To qualify, a person must be both disabled and "insured." In simple terms, "insured" means the employee must have worked for five years out of the ten year period before their disability forced them to stop working. Once a person has worked for five years in a ten year period, they are "insured." A worker remains insured for five years thereafter, whether or not they continue to work. If a person becomes disabled during the time they are insured, he or she qualifies for disability benefits under Title II of the Social Security Act. The Social Security Administration keeps detailed records on a citizen's employment history. If you wonder whether you are insured, a simple phone call to a local SSA office can get you an answer in five minutes.

What are the requirements for the "Title XVI" or "SSI" benefit program?

The SSI program is designed to provide a minimum level of income to persons who are aged, blind or disabled, and who are of extremely limited financial resources. To qualify, a person must be both disabled and have no financial resources beyond certain amounts specified in the law. Generally, a person must have less than $1,500 in cash ($3,000 for a family), and no assets which are convertible into cash. The Social Security Administration will not count a person's home in which they are living as part of that person's financial resources. Nor will the Administration count a person's car against them (as a car is needed for work.) But a second car will be so counted, along with stocks, bonds, personal property, a second home, IRA accounts, insurance policy proceeds, and almost everything else of any value. A disabled person without financial resources qualifies for disability benefits under Title XVI of the Social Security Act.

How does the Social Security Administration regard scleroderma?

The Social Security Administration knows that scleroderma can be a medical problem with potentially disastrous manifestations. Congress has written special provisions into the law regarding scleroderma. These provisions are contained in that section of the Social Security Law known as the "listings." The "listings" are so named because this section of the law is really a "list" of possible disabilities - and scleroderma is one of them. The particular listing which applies to scleroderma is known as Listing 14.04, Systemic sclerosis and scleroderma. A copy of Listing 14.04 is attached to the end of this article. Listing 14.04 provides a standard of severity. Any person who has scleroderma which is as severe as described in Listing 14.04 will automatically qualify for benefits. However, Listing 14.04 sets a very severe standard of severity. Generally, a person must suffer from scleroderma with significant and severe involvement of the respiratory system, or the cardiovascular system, or the digestive system, or the kidneys, or the muscles. What if a person suffers from scleroderma, but not as severely as Listing 14.04 requires? Can one still qualify? The answer is yes. Any person who is prevented from working by his or her medical condition is disabled and qualifies for benefits. If you suffer from scleroderma and cannot work, you are entitled to help form Social Security. The problem you face is a problem of proof. You must prove that your condition would prevent you from working.

How will the Social Security Administration decide whether my condition prevents me from working?

The Social Security Administration will conduct a very specific analysis to determine whether your medical condition prevents you from working. That analysis consists of asking five questions. First, the Administration will ask "are you working?" If you are working, you are not disabled, and your claim for benefits will be denied. Second, the Administration will ask "do you actually have scleroderma?" You must present medical records and test results which show that you actually have scleroderma. However, the mere fact of a diagnosis does not automatically qualify you for benefits. The Administration will go on to ask the other questions which follow. Third, the Administration will ask itself if your medical records and test results indicate that your scleroderma is severe enough to meet the requirements of Listing 14.04. If so, you automatically qualify. If not, the Administration will go on to ask the other following questions. Fourth, the Administration will ask if your scleroderma would prevent you from returning to the work that you have done in the past. If you are not so sick so as to prevent you from returning to your former work, you are not disabled, and your claim will be denied. If you are unable to return to any of your former jobs, then the Administration will ask one more question: Fifth, is there any other work you are capable of doing? If so, you will be denied. If not, you will be granted disability benefits.

What if I cannot work, but the Social Security Administration denies my claim for benefits?

Don't give up. The Social Security Administration turns down many qualified applicants. You can appeal if you are denied, and many many persons receive benefits only after they appeal. If you are denied benefits after filing an application, your first appeal is called a "request for reconsideration." By filing this appeal, you ask the Social Security Administration to "reconsider" your application to see if they have made a mistake. If you are denied a second time, you can request a hearing before a judge who is familiar with the law, and who does not work for the Social Security Administration. He will decide if the Social Security Administration properly analyzed your claim for benefits. The important point is don't give up. These days, the federal government does not have a lot of spare cash; and Congress feels that the Social Security Disability System is expensive and needs to be carefully controlled. This leads to a lot of institutional "inertia" which causes many deserving claims to be denied. But statistics show that the deserving claimant will be awarded benefits if he or she persists.

If I have scleroderma, and if I really am too sick to work, what would an attorney advise me to do?

Three things:

1. Accept the fact that you are in a fight, and get yourself ready to fight it. This means roll up your sleeves. Get involved in your case and stay involved. Don't expect the judge to possess the wisdom of god. Don't expect your doctor or your lawyer to do everything for you. Ask questions, and keep asking them until you get clear answers. Don't be afraid to "push" those who are working with you. Follow up on requests and promises with phone calls. After all, its YOUR disease, YOUR treatment, and YOUR legal case.

2. Get your doctor involved. The most important of the legal issues surround your medical condition. Lawyers and judges rely primarily on doctors to interpret the severity of your medical condition and to determine how it would limit you. Your doctor is your best expert. He has treated you and knows your condition best. So have a "heart to heart" conversation with your doctor. Get him or her "committed" to helping you by writing a report about your condition, providing medical records promptly when they are requested, and by working with your attorney when the need arises. Any lawyer will tell you that, incases such as these, a helpful treating physician is your single most powerful asset.

3. Be prepared to recognize and deal with the emotional aspects of your condition. Suffering from scleroderma is a frightening thing. One often feels alone and isolated. Often the disease process, along with a resulting inability to work, leaves an enormous emotional "footprint" on an individual's life. The reality is that any disabling condition, whether it be blindness, severe heart disease, cancer, or scleroderma, will always cause a lot of emotional trauma. And "trauma," wherever it leaves its footprint, is potentially harmful. Scleroderma sufferers, perhaps because of what they must go through to find a physician who can help them, are often confused, uncertain, afraid, depressed, lacking in self-esteem, hopeless, anxious and (if they are unable to work) financially stressed in the extreme. Such elements in any person's life can, and often do, create even further physical problems, which in turn exacerbate the emotional situation, until the patient is in a "downward spiral" which can often only be broken with professional help. So if you find yourself seeking treatment for your emotional difficulties, don't feel embarrassed. Don't feel like you must hide this treatment from Social Security. Your Social Security claim is protected by the federal privacy laws. No one can get access to these records without your permission.

Do I need a lawyer to help me with my claim?

Technically, a lawyer is not required. The SSA will provide assistance filling out the necessary forms. The judges, in most cases, make attempts to assure a fair hearing of the claim. Nonetheless, persons in pursuit of disability benefits face great legal challenges. The Social Security Act is a complicated law, and many of its provisions revolve around close interpretations of words such as "substantial" or "marked" or "significant." Evidence should be presented in the best possible light, and in a form which is acceptable to the Administration, or it may be ignored. Statistics show that a person who is represented by an attorney has a much better chance of obtaining benefits. Most attorneys who work exclusively on Social Security cases will take a case on a "contingency" basis, meaning that no fee is charged unless the case is won. The SSA must approve any fee charged by a representative, so clients are assured that the amount of fee reflects the work involved. With these protections, a claimant is well advised to consult an attorney when seeking disability benefits.

LISTING 14.04 SYSTEMIC SCLEROSIS AND SCLERODERMA (20 C.F.R. Pt. 404, Subpt. P, Appendix 1)

14.04 Systemic sclerosis and scleroderma. Documented as described in 14.00B3, with:

A. One of the following:

1. Muscle involvement, as described under the criteria in 14.05; or

2. Respiratory involvement, as described under the criteria in 3.00ff; or

3. Cardiovascular involvement, as described under the criteria in 4.00ff; or

4. Digestive involvement, as described under the criteria in 5.00ff; or

5. Renal involvement, as described under the criteria in 6.00ff.


B. Lesser involvement of two or more organs/body systems listed in paragraph A, with significant, documented, constitutional symptoms and signs of severe fatigue, fever, malaise, and weight loss. At least one of the organs/body systems must be involved to at least a moderate level of severity.