Sometimes, even the best accommodations at work aren’t enough to help you keep your job when you have leukemia. Anemia, fatigue, side effects from medication and chemotherapy, and other symptoms can make work impossible.
When people in the United States living with leukemia can no longer work, many seek Social Security disability benefits to replace lost income. Transitioning from working full-time to receiving disability can be difficult. “I never thought at the age of 50, I would have to stop working because of my disease,” wrote one MyLeukemiaTeam member.
The process of applying for a disability claim can feel intimidating. Facing the appeals process if you aren’t approved can be all the more daunting.
Understanding the process ahead of time can make applying easier, including what the U.S. Social Security Administration (SSA) considers in determining eligibility for disability and what information you’ll need to provide.
There are two federal disability programs in the United States, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). To qualify for either program, you must have a disability that stops you from doing your current job or any other form of gainful employment.
SSDI provides benefits to people with a recent full-time work history. The funds are drawn from payroll taxes. If you are approved for SSDI, you can receive benefits six months after the date your disability began. You are eligible for Medicare 24 months after you start receiving SSDI.
SSI offers disability benefits to low-income individuals, regardless of work history. If you are approved, you can receive benefits in the next month. Additionally, you may be eligible for back payments of SSI if you became disabled before your SSI was approved.
In most states, SSI eligibility qualifies you for Medicaid. In Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands, you have to apply for Medicaid separately from SSI, but the criteria are the same for both. Eligibility criteria for SSI recipients varies across states.
Almost every state provides an SSI supplement, with the exception of Arizona, Mississippi, North Dakota, and West Virginia. The eligibility rules for supplements vary by state.
There is an asset cap to receiving Supplemental Security Income: $2,000 in assets for individuals or $3,000 for couples. The Social Security Administration has a list of which assets (“resources”) are considered. Your primary residence, household belongings, and one personal vehicle are not counted among these assets.
It’s possible to get both SSDI and SSI if you have very limited funds and have a work history.
The SSA evaluates several factors when determining whether someone’s disability makes them eligible for benefits. Criteria for eligibility include the following:
There’s a lot of paperwork needed to apply for disability benefits for people with leukemia. The Social Security Administration offers a checklist of necessary application information. If you need assistance with your application, you might consider enlisting assistance from a trusted friend, relative, or a knowledgeable professional about the process. “The social worker I had got me on Medicare disability,” wrote one MyLeukemiaTeam member.
Below is a summary of what you’ll need to provide.
You can apply for SSDI online if you aren’t currently receiving benefits and if you haven’t been denied in the past 60 days. You may use this approach if you were born in the United States, have never been married, and are between 18 and 65. If you don’t meet any of those criteria, you can still apply at a local Social Security office or over the phone.
The SSA takes an average of three months to five months to process an application for disability benefits. However, you should be able to speed up the application process if you go through the Compassionate Allowances (CAL) program. This program identifies claims from applicants with specific conditions — including certain cancers, adult brain disorders, and some rare disorders affecting children. The program applies to people with acute leukemia and those with chronic myelogenous leukemia (CML) who have entered the blast phase. Other types of leukemia, like chronic lymphocytic leukemia (CLL), are not covered under CAL.
Once your diagnosis has been confirmed through CAL, you will be eligible for both SSI and SSDI.
The CAL program can ease the application process — though getting benefits still takes time. “With AML [acute myelogenous leukemia], you get automatically approved for disability, but that takes five months from your diagnosis,” wrote one MyLeukemiaTeam member.
“When I was hospitalized with AML, all the paperwork was done at the hospital for [disability]. With AML, it was automatically signed up,” shared a MyLeukemiaTeam member.
Only 21 percent of those who applied for disability benefits between 2009 and 2018 were approved on their first attempt. You can appeal the decision if your application is denied. The first step is reconsideration, when your case will be evaluated by someone who did not take part in the first evaluation. About 2 percent of applications that weren’t approved the first time were approved during reconsideration from 2009 through 2018.
If necessary, you have the option of filing a second appeal, which includes a hearing by an administrative law judge trained in disability laws. You may have a disability attorney represent you at this hearing. Some law firms specialize in disability hearings. In most cases, these disability lawyers do not require a set, upfront payment; rather, they will take a percentage of any benefits you do receive.
If you are denied at this level, you can ask the Appeals Council to review your case and make a decision on it. About 8 percent of SSDI claims between 2009 and 2018 were approved during a hearing with an administrative law judge or the Appeals Council. If you are denied at this level, your last remaining option is a federal court hearing.
Waiting for approval of your disability benefits can be stressful. MyLeukemiaTeam members have shared their firsthand experiences and advice on how to get approval and cope with the evaluation process.
If you’d like to research more about disability benefits in countries outside of the United States, check out these resources, listed by country:
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