Applying—and applying in time—are crucial.

You can use the ICA’s Resource Materials to guide you through the process, you can work with a knowledgeable lawyer that you can afford, and you can get great coaching and support from someone with IC who has been through this process, Jareena Sommer, longtime ICA National Patient Support Advocate who specializes in helping people with IC to obtain SSDI.

“It’s easier now since the policy interpretation ruling was issued. That was fabulous,” said Jareena, who applied in 1994, long before the ICA won that ruling in 2002. Jareena stuck with it and won her case after six years. “After I won, I realized people really need a coach and support along the way because it can be grueling.”

Don’t give up, she urged. “When you’re sick, and you’re depressed, and you don’t feel good, it makes it even harder to be determined. But you really have to fight for yourself and for other people with IC. The word has to get out there that IC is a very difficult condition to live with and that people with severe cases deserve to get that disability money.” And Jareena, the ICA, and talented, compassionate disability lawyers like Doug Smith, Esq., who helped obtain the IC ruling, are there to back you up.

Apply!

For some with IC, SSDI benefits are all that stand between them and homelessness. In fact, said Jareena, she has helped IC patients who have become homeless because they don’t have someone to support them, haven’t won their cases yet, or can’t make it on SSDI alone. (See “Survive!”)

Do you have family support or financial resources and don’t like the idea of being on “welfare”? Keep in mind that SSDI is not welfare, Mr. Smith pointed out. Rather, it is an insurance program that you have paid for through your Federal Insurance Contributions Act (FICA) taxes. Like any insurance program, if you qualify for the benefits, you are entitled to them.

And it’s critical for you to apply for these benefits as soon as you can, even if you have financial support, health insurance through a spouse, or another form of disability insurance. Why?

• Often, you can’t qualify for SSDI benefits if you haven’t worked for 5 years out of the last 10. (Calculations are different for young workers.)
• wo years after you win your disability determination, you qualify for Medicare.
• Many group and individual disability policies require you to apply for SSDI.

SSDI Changes

The process of applying for SSDI benefits and appealing decisions for IC patients has changed a great deal in the last decade. The most important change for IC patients was the Social Security’s Policy Interpretation Ruling on IC in 2002. The ruling recognizes IC as a condition that can be a basis for a disability finding, and it guides the agency’s evaluation of IC claims. That has been a boon to IC patients applying for benefits.

Another change is that the Social Security Administration pays more claims on the initial application than it did a decade ago—about 37 percent in 2004 compared with 31 percent in 1994.

Other parts of the process have changed since 2002 and will likely change in the future. For example, you can now apply for SSDI benefits on the internet or by phone instead of in person. Nevertheless, said Mr. Smith, “If you have a cooperative case worker—and most of them are—you’ll end up ahead by talking to the person face to face. You can get advice based not only on what you say, but also on your paperwork.”

In its Boston Region, Social Security is also experimenting with a new system of appeals that will likely go nationwide. In the current, conventional system, the decision levels are: initial application; reconsideration by a disability examiner; appeal to an administrative law judge; then to an appeals council; and then to federal court. The levels in the new system will be initial application; review by a federal reviewing official (FedRO), who is a lawyer; appeal to an administrative law judge; then a decision review board (which you can’t appeal to but Social Security can); and then federal court. Social Security calls the new system the “disability service initiative” (or DSI).

What DSI will mean for IC patients making disability claims is still not clear, said Mr. Smith. The big difference is in the second step. Under the conventional procedure (still followed in most states) the first appeal—or reconsideration—is handled by a disability examiner in your state who is not a lawyer, whereas in the new experimental mode it is handled by a FedRO, typically an assigned lawyer based in Baltimore, Maryland. Mr. Smith said that early reports indicate that FedROs work very congenially with claimants but don’t seem to issue more favorable decisions than old-fashioned disability examiners. Also, in this new system, administrative law judges have to show good reason for departing from the FedRO’s decision, so that step could get much tougher for applicants.

Another big change is computerization. In many regions, an electronic folder system has been put in place, but the glitches are not out of the system yet, so your materials can get lost. Always keep a copy of everything that you and your doctor furnish Social Security, said Mr. Smith. “It’s always a good practice, but now, it’s absolutely necessary because they may come back to you and say we can’t retrieve it.” Although doctors may be used to sending materials to Social Security directly, it’s important that you get a copy, too. If you can’t, at least ask your doctor to set aside everything sent to Social Security in a dedicated file.

In addition, it will help if you are computer savvy. When you appeal an unfavorable decision in the regions using the electronic system, Social Security should be able to give you a disk and some software that allows you to look at their photocopies of materials on your case. That can save you a lot of filing space, too. Being able to look at those files is key at the reconsideration and administrative law judge levels, said Mr. Smith. “It’s important when you appeal to know what other people have said about you, and not just the people who have been treating you, so you can intelligently respond. Also, you need to see what medical reports are missing that you expected to be on file.” If you can’t manage the computer system, many disability lawyers today can and will help you at these stages.

Survival

Your circumstances may be dire, but know that you can get financial help other than SSDI if you aren't working and have no one to support you. Supplemental Security Income (SSI) is designed to help aged, blind, and disabled people who have little or no income. Like SSDI, it pays disability benefits and can carry health benefits, but Medicaid rather than Medicare, and without a wait. Even if the SSI payment might be small, take it because the Medicaid benefits that come with it are worth a great deal to your life and health. Unlike SSDI, there are income and asset restrictions to qualify for SSI.

SSI information:
www.ssa.gov/notices/supplemental-security-income/
800-772-1213

State welfare departments also have disability programs— temporary ones that can help tide you over until you win your SSDI case. Unfortunately, the programs may have to be paid back out of your back benefits from SSDI.

If you depend on SSDI or these other programs to live, your income is probably low enough for you to qualify for Section 8 housing. This is a federal program that provides housing assistance to low-income renters and homeowners. You apply with local public housing authorities. The wait can be years long, but it can be worthwhile.

Section 8 information: US Department of Housing and Urban Development website www.hud.gov/offices/pih/programs/hcv

Websites with Section 8 housing search capabilities:
www.affordablehousingonline.com
http://www.gosection8.com

Get a Lawyer

When is it time to use a lawyer? Mr. Smith advises that you work with one if your initial application is turned down. That’s because it’s getting tougher and tougher for a nonprofessional to handle the appeals. An experienced disability lawyer can quickly and thoroughly pull together all the medical evidence available that shows the nature and severity of your disability. You can find lawyers who specialize in social security disability through the National Organization of Social Security Claimants Representatives (NOSSCR). (See “Here’s Help.”)

“I think having legal representation is very important,” but that doesn’t mean you can sit back, Jareena emphasized. She said that you, the person with the disability, need to do a lot of the work to pull your records together, make sure you’re submitting everything you should be, and educate the lawyer about IC if he or she isn’t familiar with it.

And don’t worry about affording a lawyer! In general, disability lawyers work on a contingency fee. “The lawyer doesn’t get paid unless he or she succeeds in getting you back benefits,” explained Mr. Smith. “And even then, it’s limited to a maximum of 25 percent of retroactive benefits the lawyer helps you obtain. To speed up Social Security’s approval of their fees, many lawyers will enter into a written fee agreement with the client, a procedure Social Security allows when the agreed fee is $5,300 or less. “Most lawyers will enter into some sort of fixed fee contract, so you’ll know in advance what it’s going to be, and if you don’t think a good job was done, you can go to Social Security and they will review it with the lawyer.”

Another option is a disability claims representative. These professionals are somewhat like paralegals and can assist you through the claims and appeals process, similar to a lawyer. They don’t have to meet the same disciplinary and educational requirements that lawyers do, but they must pass a Social Security test. You can find these professionals through advertising, in the phone book, or sometimes with referrals from lawyers. No matter who you hire to help you, don’t work with someone who treats you as a burden, for example, a lawyer who won’t talk to you on the phone or won’t meet with you until the day of the hearing, said Mr. Smith. “And if the lawyer makes you nervous, you ought to ask yourself if you’ve made a wise choice.”

Sail Over the Hurdles

The ICA, NOSSCR, Mr. Smith, Social Security, and others all have information to help you file and win. (See “Here’s Help.”) You can read about disability issues on the ICA’s website (www.ichelp.org/Disability/welcome.html). If you have made the decision to apply, we recommend ordering the “ICA Disability Set” and the “ICA Personalized Disability Packet.” The set includes Mr. Smith’s two essential guides: Disability Evaluation in a Nutshell: A Three Minute Guide to Effective Medical Reports and the Disability Workbook for Social Security Applicants.

These two publications will tell you how to file, what the Policy Interpretation Ruling on IC says, what Social Security requires from you and your doctor, and how to put together medical and functional impairment reports. The packet includes a personalized letter from the ICA to your judge or insurer along with a copy of the Policy Interpretation Ruling, articles from medical textbooks and journals that thoroughly describe IC, and information that will show an examiner or reviewing official how IC compares with official listed impairments and what the disabling effects of IC are. None of the changes Social Security has made make that information obsolete.

Those publications should give you all you need to understand how to file and win your claim. Nevertheless, Jareena and Mr. Smith have some advice about getting over common hurdles that IC patients sometimes don’t sail over successfully.

• Don’t delay.
  In most cases, you have to have worked for 5 years out of the last 10 to qualify, so don’t just let the matter drop if you are supported at home.
• Show that you are disabled!
  Now, that would seem like a no-brainer, but it’s a common mistake, said Mr. Smith. Doctors tend to document their diagnoses thoroughly but seldom include enough details about your functional problems for Social Security to tell whether you can do a job on a sustained and regular basis. Your doctor needs to show your functional impairments. The checklist for doctors on functional impairment in the Guide to Effective Medical Reports and the worksheets in the Disability Workbook should help when your doctor takes advantage of the information you provide in them.
  
  But sometimes, that’s not enough. Your doctor doesn’t track your day-to-day experience, but you can. Ask your doctor to include your and your family’s reports about how your life is affected in your medical records. The doctor can include reports that he or she finds credible with the records that go to Social Security. The medical reports need to make it crystal clear why you can’t just get some treatments and go back to work as a dependable, productive worker.
  
  Better yet, keep a health-related diary that shows how you’re affected and when. For example, you can note your inability to leave the house because of frequency, your forgetfulness and inability to concentrate brought on by fatigue from nocturia that interrupts your sleep, the numerous sick days you’ve had to take from work, or your inability to sit or stand or walk for any length of time because of the pain.
  
  You may be able to put the diary into your doctor’s records, or you may be able to submit it directly to Social Security. “Even if you don’t submit the diary, you can use it to structure what you say,” said Mr. Smith. “When the examiner matches that up with the medical records, he or she can see what happened to you between appointments or correlate what happened to you with your doctor visits. Then, your situation becomes more real to the disability examiner.” Of course, with Social Security switching to an electronic system, it’s a good idea to keep that diary on a computer so you can print it in a form suitable for their scanners or submit it in electronic form.
• Fire with both barrels on your initial application.
  The wait for reconsideration and appeals can be very long. Even getting an initial decision can take an average of three months. But the average time between filing an appeal and getting a judgment from an administrative law judge can be considerably more than a year. Jareena’s case took six years! You don’t want to wait that long—and you probably won’t if you are thorough right off the bat and support your claim with medical reports and more that show you can’t meet the physical and mental demands of a job.
• Make sure your doctor supports you.
  “You are never going to win if you don’t have a medical person backing you up. It’s crucial. Your claim won’t get anywhere if your doctor thinks you can work,” said Jareena. Sadly, she’s tried to help people whose cases were further along but then fell flat because the doctor said the patient could do some kind of job or the doctor just didn’t want to do the paperwork. What can you do? Use the worksheets from the Disability Workbook to show the doctor what is happening in your life. Better yet, make sure at the beginning of your relationship with a doctor that he or she will note the effects of your illness on your ability to function so your disability will be clear if you become unable to work.
  
  Some doctors have faith that their treatment can make you better so that you’ll be able to work in the future, and that’s a noble goal. But what’s important is that you can’t work now. Social Security periodically reviews your case to see if you’ve recovered enough to go back to work. And if you can, that’s great. It would surely be better than disability payments that barely meet rockbottom living expenses, if that. But IC is a chronic disease, and recovering enough to work is unlikely when the disease is bad enough to keep you from working.
• Keep the appeal going.
  “A lot of people who get denied just say, ‘Forget it. I can’t deal with this. It’s too much stress. It’s too much aggravation.’” said Jareena. But if you stop and then apply again later, you won’t get payments for that lapsed time, she explained. You have to keep the appeal going in order to receive the retroactive money. Just letting it drop can mean a loss of thousands of dollars.
• Don’t give up!
  “It’s so important to muster the energy to apply and appeal. And you need support,” urged Jareena. “If you can’t get the application filled out, have somebody help you or have somebody to take you to your appointments. Don’t say, ‘I’m too sick to go to the appointment with my lawyer.’ You have to do it. This is your life.”