Social Security Disability Insurance
For some, the urinary frequency, pain, sleeplessness, and associated conditions can make it impossible to hold down any sort of job and that’s when to apply for Social Security Disability Insurance (SSDI) benefits. In 2002 the Social Security’s Policy Interpretation Ruling on interstitial cystitis (IC), recognized IC as a condition that can be a basis for a disability finding, and it guides the agency’s evaluation of IC claims.
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.
Learn more about:
The process can seem long and daunting process, also find out about getting over common hurdles.
Applying for SSDI and Applying in Time are Crucial
Contact the Interstitial Cystitis Association (ICA) for help guiding you through the process, work with a knowledgeable representative that you can afford, and 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.
Understanding SSDI, a Federally-Funded Insurance Program
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.
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 years (calculations are different for young workers)
- Two years after you win your disability determination, you qualify for Medicare
- Many group and individual disability policies require you to apply for SSDI
If you quit working because of your IC and you have family support, don’t wait until you need SSDI benefits to apply for them. Waiting too many years to apply after you become disabled and quit working can disqualify you from SSDI benefits. Qualifying can be critical for you financially and medically.
One of the crucial things an SSDI determination can do is qualify you for Medicare. That can cover you if you don’t have or lose health insurance, which is common and can be financially devastating, even for middle class families. If you have left work, are on your own, and are continuing group health insurance from a job through COBRA, an SSDI determination can extend that coverage. That can carry you through until you are covered under Medicare—if you don’t delay applying for SSDI. Even if you have health insurance through a spouse’s policy, that can change because of job loss or other reasons, or your spouse may age into Medicare and out of private insurance before you do.
Another reason to apply for SSDI is that many group and individual disability insurance policies will require you to do it if you become disabled. Even if they don’t, you can be left high and dry when those benefits run out and you have exceeded the time limit for applying for SSDI benefits.
Finding 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.
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. “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.”
You can find lawyers who specialize in social security disability through the National Organization of Social Security Claimants Representatives (NOSSCR) at www.nosscr.org or 800-431-2804 or through the National Association of Disability Representatives (NADR) at www.nadr.org.
Finding a Disability Claims Representative
Another option is a non-attorney disability claims representative. These professionals can assist you through the claims and appeals process, similar to a lawyer. Many specialized non-attorney representatives formerly worked for the Social Security Administration as disability examiners, so they have specialized knowledge about the process.
An experienced disability representative can quickly and thoroughly pull together all the medical evidence that shows the nature and severity of your disability. In general, non-attorney representatives work on a contingency fee. The industry standard is limited to a maximum of 25 percent of retroactive benefits the representative helps you to obtain.
Having representation is important, but that doesn’t mean you can sit back, emphasizes Jareena Somer, an ICA patient advocate and disability representative. 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 your lawyer or representative about IC if he or she isn’t familiar with it.
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.”
You can find disability claims representatives through the National Association of Disability Representatives (NADR) at www.nadr.org. Another option is talking to other people who have gotten their SSDI benefits about who they selected as their disability representative.
Learning More about Applying for SSDI
Get savvy about SSDI with resources from the ICA and others:
Step 1: Order the ICA Personalized Disability Packet. This publication 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 ICA Personalized Disability Packet includes a personalized letter from the ICA to your judge or insurer, a copy of the Policy Interpretation Ruling, thorough medical descriptions of IC, comparisons between IC and official listed impairments, and descriptions of IC's disabling effect.
Step 2: Borrow from you local library or buy the following books:
- How to Get SSI & Social Security Disability: An Insider's Step by Step Guide, by Mike Davis (former disability examiner), Writers Club Press, September 2000
- Nolo's Guide to Social Security Disability: Getting & Keeping Your Benefits, by David A. Morton, Nolo Press, 3rd Edition 2006
Step 3: Check out other programs that may 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.
Revised October 1, 2012