By Shelby Smoak, Ph.D.
Unfortunately, a life with hemophilia may become a life with a resulting disability. This was almost a certainty before modern-day therapies due to the crippling joint damage of long-term hemophilia.
Today, however, it may be something that one faces as a temporary necessity, perhaps after joint replacement surgery, as was the case with me when I had to have a total hip replacement and was unable to work for a year. Or perhaps, hemophilia having done its damage, the need for filing for disability may be more permanent. In either scenario, it’s best to know a few primers about disability and be prepared for the possibility. None of us, I believe, really want to declare ourselves disabled, but when we cannot work because of our hemophilia, we may have to lean into Social Security disability benefits for our health and our life.
What is SSDI?
SSDI provides assistance to persons with disabilities. SSDI will pay benefits to you and certain family members if you are “insured,” meaning you worked long enough and paid Social Security taxes. SSDI recipients also become Medicare eligible after a 24-month waiting period.
Can I apply for SSDI?
SSDI: Apply if your condition has worsened, and you expect your medical condition to last a full year or longer.
I say: Bleeding disorders don’t necessarily “worsen,” but the resulting arthropathy and joint damage does, so if you are facing disability as a result of a bleeding disorder, you are likely experiencing the effects of the bleeding disorder “worsening” (arthropathy), but not necessarily the bleeding disorder itself. Therefore, your application for disability will need to involve the hematologist and an orthopedist who in tandem can verify your situation.
When I applied for disability, my hematologist provided the bleeding disorder verification and necessary lab work, and the orthopedist sent the reports and assessments about my joint damage that became more valuable within the process than the hematologist’s.
SSDI: Apply if your condition is severe enough that it keeps you from doing a substantial amount of work.
I say: In some cases, developing an inhibitor might trigger the need for disability in which case the bleeding disorder itself would be the cause of an inability to work. In other cases, the condition keeping you from working may instead be joint damage. These become important distinctions you will need to understand in your application process.
Keep in mind, employees at the Social Security Administration may not have an intimate knowledge of a bleeding disorder and/or understand its long-term effects. If joint degradation is the cause of your inability to work, keeping a steady emphasis on joint damage will help your interviewer better understand your situation. An inability to walk without assistance would keep you from working but having a lifetime of knee bleeds would not necessarily lead someone to draw the same conclusion. Moreover, in my application process, when I continually referenced my hematologist and my bleeding disorder it confused the interviewer since I was facing orthopedic hip surgery and NOT a pending bleeding disorder issue. Nearly all of the interviewer’s questions were about the orthopedist’s notes.
SSDI: Apply if you have worked 5 of the last 10 years and paid into Social Security.
I say: Past work is a requirement of receiving SSDI. It varies on how Social Security may assess your past work experience, but it is necessary. Your jobs pay into Social Security, making you eligible for those benefits. If you haven’t worked and therefore not paid into Social Security, you would be ineligible for benefits. If you are facing a disability and you have not worked and paid into Social Security, Supplemental Security Income (SSI) may be an option.
SSDI: Do not apply if your doctor doesn’t believe your condition will prevent you from working.
I say: Full support of all your physician(s), especially your hematologist and/or orthopedist is essential to the process.
SSDI: Do not apply if your condition is expected to be temporary (a year or less).
I say: This was a bit complicated for me as I was facing surgery which would see me recover in about a year and would, therefore, be temporary; yet I had no way to support myself financially during that time. Short and long-term insurance policies were not offered through my employer and were cost-prohibitive due to my HIV and hepatitis C. I was caught in a tough spot, but working with my physicians and the HTC social worker, I applied.
In my application, the orthopedist included evidence of ALL my joint damage, which became important in explaining the disability as lasting longer than a year. If the orthopedist had only sent evidence of my hip’s joint damage, the case may have never been approved since it was understood that the joint was being replaced and would, ostensibly, end any disability I had due to the hip.
It then became important to show the compounded impact of damage to multiple weight-bearing joints. This is how the approval was finally given. I only received SSDI for the year which it was needed. Once my joint was replaced and I was able to return to work, my disability claim ended.
SSDI: Do not apply if you are able to earn more than $1310/mo.
SSDI: Do not apply if you haven’t worked enough to be eligible for benefits.
I say: Both statements are as declared. In my case, I had been a full-time teacher for many years before my application and was eligible.
What additional criteria must be met to be eligible for SSDI?
SSDI: You must have a definitive lab test establishing your bleeding disorder and/or a physician signed report testifying to your condition.
I say: Simply having a bleeding disorder does not qualify someone for SSDI, but having proof of a bleeding disorder diagnosis is essential in the application process.
SSDI: For determining a disability, you must have had bleeding/clotting complications requiring at least 3 hospitalizations in the last 12 months. Further, the hospitalizations must have been at least 48 hours (which may include time spent in the ER) and be at least 30 days apart.1
I say: Remember, these criteria speak to the bleeding disorder only and would be relevant to cases like inhibitors and/or specific bleeding complications. My application - and most of those with hemophilia - would be a result of arthropathy and joint damage as the disability cause. These criteria will likely take precedent over your bleeding disorder. In fact, according to the CDC, arthritis is the most common cause of disability among adults; arthritis is a form of arthropathy or joint disease, and many physicians use the two terms interchangeably.2
SSDI: If your bleeding is relatively controlled and you do not meet the above criteria, you may be eligible based upon other factors, noted as “repeated complications of hematological disorders.”3 A person would need to show severe limitations in one of the following: performing daily living activities, maintaining social functioning, or completing tasks in a timely manner because of problems of pace, persistence, or focus.
I say: Today, many people with bleeding disorders are on prophy regimens to control their bleeding, so it seems SSDI is opening the door to the arthropathy (“repeated complications”) that would make someone eligible for disability. There may be other situations as a result of having a bleeding disorder such as repeated brain bleeds, which may impair cognition and/or motor function.
SSDI: Social Security will determine if you are unable to return to any of your past jobs or any other jobs based on your age, education, work experience, and functional limitations caused by your bleeding disorder.
I say: Social Security may investigate your work opportunities and determine if you are indeed unable to continue in your present job or find another type of work. At the time of my application, I was a teacher and my daily presence in the classroom was required, something I could not physically do. This was before online classes and Zoom, so the physical demands of my job and the limitations of my arthropathy prevented work. However, in today’s world of online classes, there may have been other work opportunities I could have pursued, and which may have prevented a disability approval. But that is only speculation. Others have shared that having to rely on crutches or having to use a splint several times a month turned out to be the reason a disability judge finally approved the application.
What are the SSDI benefits?
SSDI: Typically, SSDI provides a monthly check based on age, income, number of years worked, and projected retirement date, paying about 40% of pre-retirement income. The average monthly benefit for disabled workers is $1258 in 2020.4 After 24 months, you will be eligible for Medicare.
I say: My prior year pay stubs were provided, which were then averaged and equaled about 40% of that total income. It’s important to know the amount is not simply based on your last paycheck but the year. If you changed jobs within the year with significant salary differences, consider the average as you work out your budget.
You will need to secure insurance while waiting for Medicare. Ending work is considered a qualifying life event for eligibility for an ACA plan. You would also likely be eligible for subsidies to help pay for the insurance, especially if you were now out of work, too.
How long does it take to receive SSDI benefits?
SSDI: It will take 3-5 months to get an initial decision.
I say: It takes a long time. Plan for about a year before approval and then benefits to be received. My approval took 10 months; however, I was exceedingly organized. My paperwork was sent within a day. I communicated immediately with all my physicians and pressed them to submit required reports and signatures, and I was prompt in scheduling my interview and follow-up meetings with Social Security. Even with that, my initial application was denied. I appealed, which added time.
In the appeal, Social Security requested an additional set of x-rays from their approved radiology center. I called immediately and still had to wait several weeks before the appointment. Once these x-rays were completed, it still took another 3 months before the approval arrived. Social Security may also ask you to schedule appointments with their doctors who may have limited knowledge of bleeding disorders. Any delays with paperwork, callbacks, and appointments will only lengthen the time to process your application.
What are the top reasons SSDI claims are denied?
Lack of hard medical evidence. Doctor’s notes, medical records, exam notes, and test results are vital.
Prior denial. Restarting a new claim for the same condition does not work. Appeal the original denial.
Your income. If you are working and earning more than $1310 a month, you may get denied.
Failure to follow treatment.
Failure to cooperate. The requested paperwork must be provided, and you must show up for medical exams.
What should I do if my SSDI claim is denied?
Appeal the denied claim. Do not restart a claim. This will only add time and confusion to the process. My initial application was denied. I appealed that claim and was eventually approved.
Do not become discouraged. I have heard from others that the process can take even up to 2 years and that an initial denial seems to be part of the process.
If a second denial is received, consider contacting an advocacy organization familiar with Social Security disability or an attorney to help further your case. Patient Services Inc. (PSI) deals with many bleeding disorders-related SSDI cases and is available to the bleeding disorders community.
How will I earn income while waiting on SSDI?
This is tough to answer because these are unusually difficult times; in addition to the health complications, financial obligations can intensify the stress of this change. Having short-term and long-term disability insurance policies are meant to serve as buffers during these periods. Outside of that, your income options are limited, especially if you do not have substantial savings to fall back on.
Can I earn money while on SSDI?
Yes. The Ticket to Work program helps the disabled get back to work. Beneficiaries can work a 9-month trial period and receive full benefits. You may receive benefits in any month you earn less than $1260 (2020 figure). If you earn more than that, benefits will end.
How long may I receive SSDI benefits?
SSDI benefits will be received as long as you are disabled and unable to work. At retirement age, benefits won’t stop. The name changes from “disability benefits” to “retirement benefits” but the amount remains the same.
Hopefully, many questions regarding Social Security Disability (SSDI) have been answered. Traveling the path to applying for SSDI is often difficult—physically and emotionally. Please free to reach out to education@biomatrixsprx.com with your questions.
In our fall issue of BioMatrix News, we will examine the topic of short and long-term disability. Stay tuned!
Stay informed on the latest trends in healthcare and specialty pharmacy.
Sign up for our monthly e-newsletter, BioMatrix Abstract.
By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.
References
Social Security. “Disability Evaluation Under Social Security: 7.00 Hematological Disorders—Adults.” ssa.gov/disability/professionals/bluebook.
CDC. “Disability and Health Related Questions.” CDC.gov. 16 Sept. 2020.
Hotfelder, Aaron. “Is Social Security Disability Available for Hemophilia or Other Bleeding Disorders?” Disability Secrets. Disabilitysecrets.com.
SOURCE: Hartman, Rachel. “6 Frequently Asked Social Security Disability Benefit Questions.” U.S. News & World Report. 19 Oct. 2019. www.money.usnews.com
