Holding down a job can be difficult for people with bleeding disorders, particularly if target joints from severe hemophilia are an issue. When Jon Duncan, 52, of Rochester, Minnesota, lost his job at a grain elevator in 2001, his A made it difficult for him to find another position. “I was having so many problems that I had to have knee and hip replacements, and I had a shoulder done,” he says.
For those who need extra financial help because they are unable to work, Social Security offers two assistance programs: Social Security Disability (SSD) and Supplemental Security Income (SSI). SSD provides monthly benefits to people who have worked long enough to have earned Social Security benefits. In contrast, SSI is available for people of low income, regardless of how long they have worked. These programs can provide much-needed income for people with bleeding disorders who are unable to work. But, because the paperwork is lengthy and often confusing, and because 60% to 80% of applicants are rejected, it’s important to be clear on the terms of SSD and SSI.
“I think there are two big problems. The first is that people don’t understand the medical requirements. The second is that they don’t understand the income requirements,” says Beth Sufian, JD, director of the Bleeding Disorders Legal Information Hotline, initiated by the Houston-based Lone Star Chapter of the National Hemophilia Foundation in 2006. By understanding the requirements and keeping careful records, those who need these benefits can increase their chances of collecting them, she says.
To qualify for SSD or SSI, your condition must be expected to significantly limit your ability to work for at least a year. “Disability was not designed for a medical condition that is not going to last or is not life-limiting,” says Dorothy Clark, a spokesperson for the US Social Security Administration.
For you, your spouse or your children to be eligible for SSD, you’ll need to have paid enough into Social Security while you were working. Also, if you still work, you can’t earn more than $940 per month (after a nine-month trial work period in which you can earn an unlimited amount and still receive benefits) if you want to qualify.
Even if you meet the criteria for SSD with regard to impairments—three spontaneous bleeds within a five-month period—you may not get approved. For example, if you’re on prophylaxis and are not experiencing any breakthrough bleeds, Social Security assumes that your treatment is working and is likely to deny you. “People will often say that’s not fair, but Social Security has no obligation to provide benefits and insure every citizen. It is there to provide benefits for those who are disabled,” explains David Linney, financial projects coordinator at the Great Lakes Hemophilia Foundation in Milwaukee.
For those who haven’t paid enough into Social Security, SSI is available. To qualify, you’ll need to have limited earnings, savings and investments.
Once you’ve applied, expect to wait three to five months to get an initial decision on your case, says Clark. Even if you’re approved, you’ll have to wait six months from the date your disability officially begins to start receiving checks. That’s why it’s important to apply early. “I tell people to apply the minute they think they’re unable to work,” says Judy Moore, MSW, a social worker with the Indiana Hemophilia and Thrombosis Center in Indianapolis.
If your application is rejected, you’ll have to appeal your case and provide the Social Security Administration with additional information about your health. Then, if your appeal is denied, it can take as long as two years to get a hearing in front of a judge. As of 2007, the backlog of disability cases had skyrocketed to 750,000—leading to an average wait time of 505 days, the highest in Social Security Administration history.
That wait can be difficult for people in the community who don’t have any financial support. “We’ve had some people with bleeding disorders who have been in shelters,” says Moore. “They can’t work, they can’t get a job and they have no support system to help them.”
Duncan, the former grain elevator operator in Minnesota, applied and was denied; he reapplied and was denied again. He applied a third time and had to present his case before a judge. All in all, it was a full year and a half before he started receiving benefits. “We lived on what savings we had and my wife worked. It was kind of tough to get by during that period,” he recalls.
Under Michael J. Astrue, sworn in as Social Security commissioner in February 2007, the National Hearing Center is trying to push through some of the cases that are backlogged, according to Clark.
Improve Your Success Rate
To increase your chances of getting on SSD or SSI, take the right steps when you file for benefits, beginning with the application process. Although it might seem irrelevant whether you apply over the phone, on the Internet or in person, it can make a big difference to your case. Sufian knows of healthy-looking people who applied in person at the Social Security office, only to be rejected. “If you look fine and you go into the Social Security office, your application is going to be denied,” she says. Unless you actually look ill, she recommends applying over the phone.
The more serious your health situation sounds, the better your odds of success, says Moore. “When you make that first call to SSI or SSD, you need to tell them the things that make your day miserable.” Those include the days you’re having a bleed, can’t stand up, can’t walk or need somebody to prepare your food, she adds.
Good record keeping is crucial. That means documenting the dates of every visit to doctors, hospitals and clinics; the names and dosages of all medications you take; and your lab test results. Keep a phone log of the conversations with your healthcare provider, as well as with anyone you contact at the Social Security Administration, says Bill Berger, MSW, a social worker at the St. Louis University Adult Hemophilia Treatment Center in Missouri. The more information you can provide, the faster the staff at the Disability Determination Bureau can review your case and decide whether you qualify, he says.
It’s also important to carefully document your health history, including any bleeding episodes you’ve experienced, both at home and in a hospital or treatment center. “On your application, describe the nature of the bleeds and how they affect you,” Linney says.
Keep a home log of all your treatments and bleeds on a calendar or in a notebook. The more detail you can include (for example, “right-elbow bleed, puffy, sore, hot—called treatment center”), the better, according to Linney. Visit your hemophilia treatment center (HTC) at least once a year, even if you’re treating yourself at home. The HTC can also keep detailed records of your condition on file.
Finally, get an advocate to work on your behalf. Contact the social worker at your HTC, hire a lawyer to see you through the appeals process, or call one of the services that provides information about SSD, SSI and other federal entitlement programs.
If you were turned down for Social Security benefits the first time you applied, know that the process takes time and don’t lose heart. “You have to have a lot of persistence and stay with it,” says Duncan, who finally made it through the appeals process and now receives benefits. “Don’t give up.”