In the State of California, for example, state benefits are available for only one year. These benefits are generally considered a transitional program to either assist the applicant in returning to work or to provide benefits during the often lengthy SSA application period. To qualify at the federal level and for many employer disability policies, you must be completely disabled and unable to work.

If you are currently working, check your personnel policies and/or any related materials to see if your employer offers disability insurance. To research whether your state offers disability benefits, check your phone book under State Government Listings and/or contact your local State Representative's Office. To apply for SSA disability benefits, contact your local federal Social Security District Office. (You can find a list of these by zipcode at www.ssa.gov.) SSA also has a toll free number to request materials and information: 1-800-SSA-1213.

According to the 1995 Social Security Handbook, the Federal Social Security Act and related laws established a number of programs of interest to the IC community. These include: Retirement insurance, Social Security Disability insurance (SSDI), Medicare and Supplemental Security Income (SSI).

Your eligibility for SSA retirement, SSDI, and Medicare depends entirely on your work record and whether you meet SSA's reported income guidelines (roughly speaking, you must have worked five of the past ten years). The amount of money you receive under SSDI depends on how much money you paid into the Social Security system. If you did not work or did not pay Social Security tax while working, you may instead apply for SSI, a needs based program available to individuals with very limited income and few, if any, resources. Or, if you paid some but little Social Security tax while working and you meet the financial qualifications for SSI, you may apply for SSI as well as SSDI. There are no financial income or resource limitations for SSDI. In all other respects, the eligibility stands for SSDI and SSI are the same.

1. Completing an application and providing resource materials
2. An interview (in person or by phone) with an SSA Claims Representative
3. Review of your application by an SSA Disability Analyst
4. Possible Consultative Examination (CE) by an outside physician
5. Review of CE results and preliminary ruling by SSA
6. If denied, a "Request for Reconsideration"
7. If denied again, a "Request for Hearing" before an Administrative Law Judge
8. If denied again, a written request to the Appeals Council
9. If denied again, an appeal to the courts.

According to Ms. Shah, it's usually best if you complete the application at home, where you can take the time to carefully and thoroughly respond to the questions. You will need a complete list of doctors who have seen you. If you are trying to go back to a certain date, you will have to list all of the medical sources that you used to that date.

Ms. Shah continued "The one thing that I always tell my clients is that we all try to portray ourselves in a positive way. But, on your application, you want to say why you can't work. Swallow your pride and say exactly what you cannot do. The goal of the application is to focus on your disability." Be brutally honest and truthful.

IC patients have often wondered whether they should go into the office for an interview or interview over the phone, usually because we're concerned that we'll look "too healthy." Much to my surprise and for very good reasons, Ms. Shah has a preference for IC patients doing interviews in person. Why? (1) If the interview is done by phone, it's easy for things to get misinterpreted. If you are in the office, you can verify what they are writing down, (2) Each application has a section for interviewers' comments, where the SSA worker may write that you don't look good, or were in obvious pain. An extra note from an impartial staff member showing that you were ill during the appointment can't hurt.

1. A recent letter/report from your physician on your medical condition, your diagnosis and the tests that they used to establish the diagnosis and your inability to work. A doctor's report is most helpful when it clearly states that you are unable to perform even sedentary work.
2. A complete copy of your medical records.
3. One or more recent articles on IC, which clearly and simply explain the disease and its symptoms.

This combination of items will assist the SSA in understanding your disease, reduce their case development time, and may cut months off the time it takes SSA to make a decision. Your records should cover a period of time from the onset date to as close to the current date as possible.

One of the biggest difficulties IC patients face is that we often go to three or four doctors before finding one who is sophisticated enough to make the diagnosis. Should we give SSA the names of doctors who were unsupportive? According to Ms. Shah, it depends upon how far back you want to go to establish your disability. If that was the only physician you were seeing, then you will have to provide that information to support your case. It can be useful, though, to have your current physician write an additional letter which states that many doctors aren't knowledgeable of IC and may not believe in the disease. Based upon his/her examinations, your doctor should add that you clearly meet the diagnostic criteria for the disease.

Social Security Disability Insurance is relevant only to patients who are fully disabled and unable to work. Because IC is so new and not on SSA's formal "list of impairments", it's essential that the doctor's letter convey as much information as possible about IC, its symptoms and how it limits you. If you have an attorney representing you, they may wish to help construct the doctor's letter so that it clearly shows why you can't work. Comprehensive, rather than simple, successful letters may show that, due to pain, patients have reduced attention, concentration and sleep. It may also say that patients are bedridden, can't sit or stand for long periods of time, etc. etc.

Once your application and interview are complete, your file is forwarded to a disability analyst (from a regional Disability Determination Service) who will review the materials included. If your disease is on the approved SSA list, you may be approved very early in the process. If the analyst needs more information, they may choose to send you to an independent doctor for a "consultative examination."

Consultative exams (CEs) can be a great challenge for IC patients because they are most frequently sent to general physicians and internists who may not have much information on may hold preconceived notions of IC. If you are required to visit a physician, prepare yourself by bringing a complete list of symptoms and medications with you. A letter from your doctor confirming the symptoms and your inability to work can be very helpful at this stage because consultative examiners can be reluctant to disagree with a physician who has been treating you for months or years on the basis of their own 15 minute appointment.

It's clear that some doctors walk into appointments looking for a reason to deny you. Be truthful, direct and talk specifically about your symptoms and the resources your physicians have used to make the diagnosis. Focus on how IC limits your ability to perform your basic life functions, with pain or otherwise. If you find that the physician doesn't believe in IC or if they mistreat you, you may want to report them both to the SSA and your state medical association. Some physicians can be removed from the process if they repeatedly say that everyone who visits them can perform work.

After your consultative exam, your file will be reviewed by SSA staff and physicians, at which time a decision will be made on the basis of the information provided. If you are approved, you will receive a letter explaining your benefits and their related conditions. If you are denied, look carefully at the letter for any clues as to why they may have denied you. This is your first indication of what information they may be missing or need.

It's very common for applicants to give up at this first stage and you must remember that you are not the only patient being denied. SSA has roughly an 80% denial rate at this stage. Sometimes it's just luck that some patients are approved at the first stage, while others have to go through appeals. Don't give up if you are denied! Fight for the benefits that you have paid into and that you are eligible for.

Your first appeal right is to file a "Request for Reconsideration." At this time, you can provide additional information for SSA staff to review. You also have the right to review your SSA file, though this may be difficult at first. Expect a surprised expression when you ask to see it, then carefully look at any notes added to the file by staff and/or the physician. Rather than get angry or upset, your job now is to gather credible information that could discount and/or reverse their conclusions.

If your Request for Reconsideration is denied, you have the right to request a Hearing in front of an Administrative Law Judge. Though it sounds daunting and may take almost a year to obtain various parts of the country, it is actually easier to win at the hearing than the reconsideration stage. You'll want to: (1) bring a recent letter from your doctor and (2) make sure your file is complete with updated medical records. You must have a medical impairment supported by objective evidence like diagnostic tests and clinical findings. Generally, you will have a higher chance of success, if you are represented by an competent attorney."

1. IC is not on the SSA "Listing of Impairments." As such, you must have a doctor clearly explain what IC is, how the diagnosis is made AND how it limits you. An attorney can provide very specific and helpful language to include in the letter.
2. Potential Pain Pill Addiction. If, at any time, a doctor has implied or said that you might have a problem with addiction (i.e. after a few visits to an ER), you'll need to assume that this is in your medical records. This is a hot button for SSA. Make sure that you have your doctor address, in writing, this issue by stating that high doses of pain medication is not indicative of an addiction to the medications in your case. Also, you might want to include one of the Dan Brookoff transcripts on Pain which specifically addresses this point.

Sheila Shah currently works as a Staff Attorney at The Hawkins Center, which provides legal and support services for the disabled in Northern California. She was raised in the San Francisco Bay Area and received her degrees from UC Berkeley and Hastings College of Law. Prior to joining the Hawkins Center, she practiced plaintiff's side employment law in San Francisco, including ADA litigation.

The non-profit Hawkins Center has been an essential resource for IC patients in Northern California. The purpose of the center is to provide legal advice and representation in the area of Social Security Law in a program that recognizes the significant physical and emotional impact of sudden or long-term disability. The Center seeks to provide comprehensive support to the disabled individual, taking into account the person's financial and social needs.

• Social Security Administration - www.ssa.gov
• SSA FAQ (extensive & excellent Q&A) - www.nosscr.org/faqind.html
• www.nosscr.org/links.html
• SSA Online
• PEBES Online Request
• SSA Forms
• Social Security Rulings
• SSR/AR Finding Lists
• Legislative Information
• Social Security Law Materials - Cornell Legal Information Institute
• Association of Administrative Law Judges - AALJ, Inc.

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