Secrets of the Social Security System

By Jennifer Romero, Licensed Clinical Social Worker

If you are a person with pemphigus whose condition is severe enough to prevent you from doing any gainful work activity, you could be eligible for assistance from the Social Security Administration (SSA).

Pemphigus is described in the SSAU Publication No. 64-039 Disability Evaluation Under Social Security, Section 8.03 (page 58) listing of eligible impairments. The language the SSA uses is: “Pemphigus, erythema multiform bullosum, bullous pemphigoid, dermatitis herpeti–formis. With extensive lesions not responding to prescribed treatment.”


The decision to apply for assistance from the SSA is never an easy one. The process of applying for assistance is time-consuming and often frustrating. The definition of disability in the Social Security law is a strict one. To be eligible for benefits, a person must be unable to do any kind of substantial gainful work because of a physical or mental impairment (or a combination of impairments) which is “expected either to last at least 12 months or to end in death.”

This is harsh language. However, it is best to utilize the same language the SSA uses in your own application where it is applicable. In other words, when you file your initial application (or are writing a letter of appeal) discuss your own case of pemphigus in the context of the above definition. For example, you could say something like: a diagnosis of pemphigus means I have an autoimmune blistering disorder, pemphigus is a lifetime disease for which there is no known cure.

If, because of a medical condition, a person cannot do the work that they performed in the past, then age, education, and past work experience are considered in determining whether the person can do other work. If the evidence shows that the person can do other work, even if it involves different skills or pays less than their previous work, they cannot be considered disabled for Social Security purposes.

Working through any government bureaucracy can be overwhelming and exhausting. Some of you may have previously applied for SSA assistance and been denied such assistance. You may have given up without appealing the decision because it was too much trouble. This article serves two purposes: 1) to explain how to facilitate your own application process, and 2) to encourage those of you who are eligible to seek assistance based on your rights as a disabled person. This article is about adults who have been diagnosed with and are undergoing treatment for pemphigus.

Adults (over 18 years of age) who are severely disabled may be eligible for monthly benefits under one or more of the programs the SSA administers. Both the SSI and the Social Security Disability (SSD) programs provide a monthly income for people with severe disabilities.

However, the eligibility requirements for the two programs are different. The SSI program provides monthly income to people who are age 65 or older, or are blind or disabled, and have limited income and financial resources. Effective January 1999, the SSI payment for an eligible individual is $500 per month and $751 per month for an eligible couple. If you are married, and only one person is eligible, a portion of your spouse’s income may be counted. In addition, your financial resources (savings and assets you own) cannot exceed $2,000 ($3,000 if married). You can be eligible for SSI even if you have never worked in employment covered under Social Security.

The Social Security program pays benefits to disabled or retired workers and their families and to the families of deceased workers. To be eligible for Social Security disability benefits, you must be disabled and must have earned a minimum number of credits from work covered under Social Security. (The required number of credits varies depending on your age at the time you became disabled.) SSD benefit amounts and eligibility criteria will depend on your work and income history at the time you are determined to be disabled.

Generally, to be eligible for SSI, an individual also must be a resident of the United States and must be a citizen or a noncitizen lawfully admitted for permanent residence. Also, some noncitizens granted a special status by the Immigration and Naturalization Service may be eligible.

Medicare is a Federal health insurance program for people age 65 or older, people of any age with permanent kidney failure, and certain people with disabilities (including those with pemphigus). The two parts of Medicare are hospital insurance (Part A) and medical insurance (Part B).

The hospital insurance program (Part A of Medicare) helps pay for inpatient hospital care and certain follow-up care. It is financed by Social Security taxes paid by employees, employers, and the self-employed. People age 65 and over are eligible, on a premium-free basis, if they are entitled to monthly Social Security or railroad retirement benefits.

People under age 65 are eligible for premium-free hospital insurance if they have been entitled for more than 24 months to disability benefits under the Social Security or railroad retirement systems. Disabled people under age 65 who have worked long enough in covered government employment to be insured for Medicare purposes are also eligible.

The supplementary medical insurance program (Part B of Medicare) helps pay for doctors’ services and other medical expenses. It is a voluntary program that is financed through monthly premiums paid by the enrolled individuals and through Federal general revenues. Most states also offer supplemental programs to those eligible for Medicare on an individual, premium-paid basis.

Anyone who is entitled to Part A of Medicare on a premium-free basis can enroll for Part B. (Most of these people are automatically enrolled in Part B, unless they sign a statement that they do not want Part B coverage. ) Also, people age 65 or older who are not entitled to Part A can generally enroll in Part B.

Under the law, people who receive SSI generally are covered under the state Medicaid program. Within broad Federal requirements, each state decides its criteria for Medicaid eligibility and the amount of medical care and related services covered. States generally provide coverage for people who receive cash assistance, such as SSI payments. They may also provide coverage for people who are not eligible for cash assistance but who are unable to pay their own medical expenses.

Remember the most important benefit from SSI is the comprehensive medical insurance provided by Medicaid. Often, being eligible for Medicaid is enough for a family to continue to be financially solvent while also coping with a disabling disease. Further information about the state’s Medicaid program may be obtained from the people in any public assistance office.

Children with pemphigus could also be eligible for Supplemental Security Income (SSI), however, their criteria for eligibility are different. To apply for SSI benefits for a child with pemphigus you may telephone 1-800-772-1213 or request an SSI application for a child at your local social security office.

To apply. The application process begins with a simple telephone call. The number to call is 1-800-772-1213. This phone call “starts the clock ticking” to measure the date from which past benefits will be paid. An SSA representative will ask you a few questions (this is also an opportunity for you to ask your questions) and schedule you for a telephone interview. A local SSA representative will then contact you at the scheduled time. You may also visit your local social security office to apply. You can locate the telephone number and address of your local social security office in the telephone book. If you decide to visit in person, it may be most convenient to telephone ahead and schedule an appointment with a claims representative.

Why appeal the denial of an SSI application? SSA turns down many applications for SSI and SSD benefits. However, when applicants appeal these decisions, many are able to reverse the denial. Then they may receive retroactive benefits, back to the date of the original application. Because people often express anxiety about writing a letter of appeal, I have included a sample letter as Appendix A to this article.

If an applicant is found ineligible, the SSA sends a “notice of denial,” which explains whether the denial is based on financial or medical reasons. The applicant has 60 days from the date the letter is received to file an appeal. There are four stages in the appeals process. An applicant may be successful at any of these stages, but must follow each step in the designated order: (1) Reconsideration, (2) Administrative Law Judge hearing, (3) Social Security Appeals Council review, and (4) Civil lawsuit in the U.S. District Court. An applicant has 60 days to complete each step.

Legal assistance is not required for an appeal, however, it can be extremely helpful, especially after reconsideration. Your local legal aid or legal services office can help if you cannot afford an attorney; their lawyers and paralegals handle many such hearings. Remember, most applicants are able to manage their first appeal without legal assistance.

Working up a case. The SSA defines a disability for adults “as the inability to engage in any substantial gainful activity by reason of a medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” A medically determinable impairment is based on medical evidence consisting of signs, symptoms, and laboratory findings. People with diagnosed pemphigus have had multiple laboratory tests in the process of their being diagnosed, however indirect immune florescence (from biopsy) is the standard laboratory test used to confirm the diagnosis of pemphigus.

While applying, it is important to keep copies of all correspondence and records of all telephone calls with your SSA representative. You must be diligent about deadlines. If you are late for a deadline, you will need to start the whole process again from the beginning. You can designate a representative to assist you in your correspondence with the SSA. A representative will receive copies of the correspondence the SSA sends to you. This can be especially helpful if you are too ill to keep up with your own correspondence.

View your disability from a broad perspective. Say you have a diagnosis of pemphigus vulgaris, also be aware of any additional diagnoses you may have received secondary to the treatment of pemphigus (for example, osteoporosis, diabetes, cataracts, immune suppressed status, and pain).

Adults are only evaluated based on medical factors and evidence. The SSA will evaluate your pain based on:

  1. Your daily activities
  2. Duration, frequency, and intensity of pain
  3. Precipitating and aggravating factors
  4. Dosage, effectiveness and side effects of medication
  5. Functional restrictions.

Provide information to the SSA that is as complete and detailed as possible. Be prepared to provide names, addresses, and telephone numbers of your physicians. Be ready to provide dates of hospitalization and your medical record number. Be able to discuss the details of all medications you have taken and are currently taking (including any life adjustments).

Build a relationship with your disability analyst. Find our the name and telephone number of the analyst assigned to your case. Find out if any particular information is needed by the analyst and facilitate their access to this information to the best of your ability. Decide which disabilities describe your Continued from page nine situation and which can be documented under SSA regulations. Draft a persuasive letter to the analyst which ties your position to the factual evidence. Such a letter could be submitted at the time of your initial application, it is not mandatory, but it could establish a basis for your request for assistance for a very rare and little understood disease. Send a copy of this letter to the SSA analyst as well as to your treating physicians.

Talk with your treating physicians about your intention to apply for social security benefits. Often physicians are only too willing to help but they are unsure of the language they need to use when discussing your medical status with the SSA. Sharing the letter you plan to send to your SSA representative with your physicians will enable them to use similar concepts and terms in their own letters.

This decision to apply for social security benefits is often reached after a serious and prolonged illness. No one chooses to be disabled. However, recognizing that one is disabled is a personal responsibility to pursue resources and financial support which can promote access to appropriate self care and health care. A diagnosis of pemphigus requires many, many life adjustments. Your medical status may improve significantly with time. When your situation is improved your disability may need to be reevaluated. Some people with pemphigus improve significantly with time and treatment and do eventually return to work and relinquish their social security benefits.

Although applying for SSI or SSD can be a stressful process it is important to keep focused on the long-term goal of minimizing stress in your life. Worry about income and health care insurance are sure to cause stress. If you believe you qualify to receive assistance from the SSA, it is worth the hassle of applying and appealing. When you are finally successful, you will be able to enjoy a prolonged period of time free of worry about access to quality health care.

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