Interstitial Cystitis and Disability Insurance

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 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

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.

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 independent doctor for a “consultative examination.”

Consultative exams (CE’s) 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 IC or 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.

The preliminary ruling by SSA

After assessing your application and examination results, you may be approved and will receive a letter explaining your benefits and their related conditions. Yahoo!

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.

The Appeal Process

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 Administrative Law Judge hearing. 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.”

An Appeal Success Story – Sue Roush

(Exclusive to the ICN – Sue’s story first appeared in our 2004 Fall IC Optimist)

Sue Roush is an inspiration to all iC patients. In March 2004 and after a four-year battle, Sue was finally granted her disability benefits when a Federal judge reversed the decisions of both an Appeals Council and an Administrative Law Judge. The key obstacle that she faced was proving that she had urinary frequency.

Appeal #1—Her Application & Reconsideration

Sue’s application for Social Security benefits began just like most others. Her IC symptoms, as well as a severe kidney problem, had become disabling and she was unable to work. She, like many other applicants, applied with the hope and wish that she would be given benefits. But, as is the norm for many applicants, her application was denied. SSA said that the evidence revealed no severe abnormalities. As was her right, she appealed that decision in a “Reconsideration.” This is, essentially, a review of the initial denial of benefits and is notorious for being a “rubber stamp” of the first decision. Sue lost her first appeal. SSA said her medical conditions were not so severe as to prevent her from working

Appeal #2—Administrative Law Judge

In her second appeal, Sue requested a hearing with an Administrative Law Judge (ALJ). The ALJ received evidence from Sue’s urologist that she needed to urinate every twenty minutes. A vocational expert testified that she was unemployable because of her extreme frequency. In his ruling, the ALJ stated that there was no objective evidence (i.e.lab tests, examinations, etc.) that proved Ms. Roush had frequency or that her doctor “personally observed such urinary frequency. Most frustrating of all, he ruled that because Sue had only needed to take one restroom break during the hour long hearing, that she could work in a position that allowed her to take an hourly break and thus was not disabled. It was, in our opinion, an outrageous observation and decision.

Appeal #3—Appeals Council

Sue then requested that the Appeals Council review the ALJ decision. The Appeals Council conducts a paper review of an ALJ decision and according to R. Gregory Park, Esq., who represented Ms. Roush during the appeals process, “The statistics are poor for reversal at this stage. The vast majority of cases are denied again.” And, as fate would have it, Ms. Roush’s case was denied for the fourth time.

Appeal #4—Federal Court Review & Approval

It took courage and fortitude for Sue to make a final appeal. Applicants have 60 days to request a Federal Court review of an Appeals Council decision. The Federal Court typically looks for either an error of law or an error of fact in the ALJ decision. If this is found, the Court can grant benefits and/or send the case back to the ALJ for review.

R. Gregory Park, Esq. offered “The SSA attorneys attacked the case vigorously at this point. They demanded that benefits go only to patients with disabilities that are well supported by objective evidence (i.e. lab work, tests and examinations) rather than illnesses that depend upon subjective patient testimony. In Sue’s case, there was no objective evidence of frequency. It is entirely subjective.”

The Federal Court agreed with Mr. Park. In their favorable ruling, they write:

Defendant (SSA) goes on to argue that there is no evidence that Dr. Lawley personally observed such urinary frequency. The absurdity of this statement is not lost on the Court. However, Defendant’s argument identifies precisely the issue in this case, namely whether Plaintiff must provide objective evidence of a symptom for which there is no objective evidence.

The recent Social Security Ruling on IC (02-2p) played a defining role in this case. While the attorneys for SSA focused on the lack of objective evidence of frequency, the ruling on IC persuaded the Federal Judge that a patient could have frequency. SSR 02-2p said “The presence of urinary frequency alone can necessitate trips to the bathroom as often as every ten to fifteen minutes, day and night.” Indeed, the Federal Judge found that there was no evidence that the Ms. Roush only had to urinate every hour when, in fact, her doctor and she provided testimony to the contrary. The Court further cited notes in Ms. Roush’s medical file which showed that she had “very significantly elevated urgency and frequency of urination” over a number of years.

The Court also found the ALJ’s observation of her one restroom break during the hearing “patently insufficient to sustain denial of her benefits.” On March 30, 2004, US Senior District Judge S. Arthur Spiegel ordered the Social Security Administration to award Ms. Roush disability benefits.

Tips For Applicants Preparing To Appeal

While there were other complexities to this case that we have not discussed, what’s important to remember is that medical evidence is critical to the success of any disability claim. We asked R. Gregory Park, Ms. Roush’s attorney, for his suggestions on how a patient should prepare for their appeals. He offered several suggestions:

1. Appeal immediately and keep appealing!
2. Obtain representation. Everyone needs an attorney at the ALJ stage. Your attorney should help you develop the medical evidence necessary to support your case.
3. Your doctors must be aware of your application for SS benefits. The doctor has to be ready to respond to SSA questions about your condition with more than just a “here’s the file” note. It helps for doctors to describe symptoms & severity and to use descriptors when describing pain. Focus on the symptoms and how it affects their daily lives. Use voiding diaries!
4. Tell your doctor how often you void. Such numbers reported in your medical chart greatly enhance patient credibility. A voiding diary that shows your frequency, volume and/or pain levels can be very helpful in developing your case. Mr. Park offered, “It’s also important that the doctor understands SSA’s definition of disability. They can be easily misled if they believe the disability standard involves part-time work. Doctors often think that patients can. But, SSA is required to consider whether a person has lost the ability to work 40 hours a week, consistently and over time.”

Sue Roush proves that IC patients can fight back. When faced with horrifying discrimination on the job, she knew that she had to try to stop workplace discrimination. She did! When she also fought for and won her Social Security benefits, she created a national precedent that may help thousands of other patients receive their benefits. It is for this reason that she agreed to tell her story. Sue Roush is one of the most inspirational, courageous and motivating patients we have ever talked with. She is an IC hero.

Finding An Attorney

Locating an attorney to help you with your social security claim shouldn’t be too hard.

1. We suggest that you first contact any disability advocacy groups in your county or state. Ask them if they offer any legal service programs, such as theHawkins Center that might help you with your social security appeal process.
2. Contact your local bar association and ask if there are any local legal aid groups that can assist you for a modest or, better yet, no fee.
3. Ask friends and family members if they can suggest a local attorney. It’s always good to have a personal referral to help you avoid potential attorney nightmares.
4. Last but not least, try googling disability attorneys in your city or state.

When you have your first interview, we strongly encourage you NOT to sign any agreements. Please take a copy of any payment agreements home with you to review them carefully and slowly rather than signing under pressure. Some attorneys may charge extra fees that, on the surface, you might not see. Please double check all agreements carefully before signing.

(A note from ICN President Jill – I speak from experience. I had an attorney misuse some of my funds because he was going through a bankruptcy. I sorely wished that I had talked with other clients or attorneys who knew him who later advised that his reputation wasn’t as good as I was led to believe. I signed out of desperation… and I’ll never do that again.)

Additional Disability Resources

• 2015 SSA Updated Ruling on Interstitial Cystitis
• Social Security Administration
• National Organization of Social Security Claims Representatives
• SSA Forms
• Social Security Rulings
• SSR/AR Finding Lists

Author: Jill Osborne, MA
Created: June 1998,
Revision: January 24, 2017