Interstitial Cystitis and Disability Insurance

Jill Osborne MA – ICN Founder

Are you unable to sit for reasonable periods of time? Is running to the restroom getting in the way of your work? Is the commute to work excruciating? Is pain making it difficult to concentrate? It may be time to consider applying for disability insurance. From school teachers to airline pilots, judges to command staff in every branch of the military, IC can make it difficult, if not impossible, to perform your work functions. There’s no reason to suffer in silence and exhaust your finances when a disability program can provide short or long term aid. I used it without shame. So can you – Jill Osborne, ICN President

Four Types of Disability Benefits

From private insurance obtained through some employers to state managed programs, federal Social Security (SSA) and Supplemental Security Income (SSI) programs, you may qualify for benefits if your condition prevents you from performing the essential daily functions of your job. Luckily, IC patients have had much more success receiving benefits in recent years due to a new SSA ruling but you may still find it difficult to navigate the wide variety of programs available.

  • Private Disability Insurance is usually obtained through your employer if they offer disability benefits. In general, private disability insurance kicks in once you meet the criteria for SSA disability (see below). If you are currently working, check your personnel policies and/or any related materials to see if your employer offers disability insurance.
  • State Disability Insurance (SDI) is offered by several US states for residents. SDI is usually a transitional rather than long term disability program, the goal of which is to assist you in returning to work (i.e. after an accident or pregnancy) or to provide benefits during the often lengthy SSA application period. 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.
  • Social Security AdministrationSocial Security Disability Insurance (SSDI) is a federally funded program offered by theSocial Security Administration (SSA). Your eligibility for 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.
  • Supplemental Security Income (SSI) is a needs based federal program available to individuals with very limited income and few, if any, resources. There are no financial income or resource limitations for SSDI. It is also run by the Social Security Administration.

SSA Application Process

The SSA application process can be long and burdensome, especially if you are FIRST denied. There are several steps in the process that can take as few as three months to as long as a year before you might receive benefits. The good news is that they often pay benefits retroactive to the time of disability! Here’s a quick overview of the steps involved.

Completing an application and providing resource materials

According to Sheila Shah, a disability attorney with the Hawkins Center, 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 said “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.

You can now apply for SSDI by phone (1-800-772-1213) or directly on the web! Click here to begin the on-line application process.

The interview with an SSA Claims Representative

Disability InterviewIC 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.

Don’t forget to bring 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. A complete copy of your medical records is usually requested. We also suggest that you bring one or more articles on IC which clearly and simply explain the disease and symptoms.

Should you provide records from a doctor who didn’t believe you? 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.

The Doctor’s Letter & Report

Social Security Disability Insurance is relevant only to patients who are fully disabled and unable to work. Because IC is so complex, it’s essential that your 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 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.

Application Reviews & Consultative Examination

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 the analyst needs more information, they may choose to send you to an inde