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Disability Benefits, Supplemental Income, and Lupus

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Disability benefits and supplemental security income (SSI) can act as a financial “safety net” for people with severe symptoms of lupus.

Lupus brings large bills for medications, treatments, and lab tests. It also makes it harder to work full time. The financial realities of living with lupus can force choices upon you. Should you pay for a particular treatment or the phone bill? Disability benefits are designed to help.

Disability benefits are a stipend that the government provides to people who, due to illness or injury, can no longer perform their job in a normal way or earn a living wage “for a duration of 12 months.” It is intended to act as a “safety net” of sorts for workers and their families. SSDI and the very similar supplemental security income (SSI) can be a lifesaver for people with lupus. In theory, these benefits allow people to afford the basics of food and shelter each month. Depending on the costs of living where you are, this can be plenty or it can be a shoestring budget. But it is far better than nothing and it can make a big difference.


Preparing for the battle

If you have lupus (in particular if you have systemic lupus erythematosus) you likely have experienced pain and stiffness in your joints, fatigue, weakness, and even organ damage. All of which can affect your ability to work and earn a living wage. If your symptoms are severe enough to affect your work, then you may be eligible for disability benefits.

However, the Social Security Administration are the ones that will determine this, and they can be very picky. As Charis Hill, a chronic disease advocate describes it in her blog post on The Mighty, the process can feel dehumanizing, humiliating, and even invasive. They pick apart your application and your life. It can also take years to process – and even then, at the end, the SSA rejects most proposals.

Many people become discouraged – but persistence is key.


Pursuing disability benefits for lupus

People with a confirmed diagnosis of lupus qualify for disability benefits. But, due to the nature of lupus, it can be complicated. Your symptoms may change over time, flare up and remit. Certain symptoms (especially physical ones) carry more weight with the SSA than others (especially ‘invisible’ ones such as fatigue or depression). Rejections are common, but appeals are always possible.

You can apply online here with an English-language form, or schedule a time to apply in another

One piece of advice is to hire a lawyer that specializes in applying for social security benefits. A lawyer helps:

  • Ensure the application is returned within the 60-day timeframe from the SSA
  • Include the relevant paperwork, statements, etc.
  • Keep track of documents
  • Create the application using standardized language

In addition, having a lawyer handling the application will also take on much of the emotional and physical burden of the application (and rejection) and give you the space to take care of yourself.

Social security lawyers typically also work on a “contingency” basis, which means that they are only paid when they win. Typically, they are not paid hourly. Instead, they receive a percentage of your backpay (usually about ¼) up to a hard limit of $6,000.

You can (and should) ask about these payment methods when selecting a lawyer.


What documents do I need to get disability benefits with lupus?

Speaking of documents, you will need quite a few of them, including:

  • Your Birth Certificate (with your date and place of birth)
  • Marriage and Divorce Certificates if you are applying as part of a married couple
  • Any Education documentation, such as degrees or GEDs
  • Social Security Numbers for children who are disabled and under 18, or under 22 and unmarried
  • Any military service records or job history documents that work as proof of employment,
    including self-employment documentarian or pay stubs.
  • Doctor information and medical records
  • Bank info (so that they can directly deposit your checks into the account)
  • Emergency contact information

The American Association of People with Disabilities (AADP) website names specific forms to look out

  • The Disability Report, Adult, FORM SSA-3368-BK
  • The Work History Report, FORM SSA-3359-BK
  • The Recent Medical Treatment Report, FORM HA-4631
  • The Medications Report, FORM HA-4632
  • The Hearing Request, FORM HA-4632

If you think this sounds ridiculously complicated – it is. According to the SSA website, they will help you with these forms. However, if you can, you may be better served by turning to a friend, family member, or caretaker that can help you document your symptoms. The lawyer can help you with this as well. In any case, the more information you can bring to the table, the better your chances at acceptance.


How much are the benefits?

Are disability benefits worth the trouble?

For adults who used to be in the workforce, “SSDI benefits are based on average lifetime earnings before disability.” The math they use to calculate this is complicated. Though you can get an idea of what you may be due by looking at your paid social security taxes here and using the calculator they provide here.

It is also slightly different for people who have been disabled since childhood or never entered the workforce at all due to their disability, but for the most part, according to the website “Disability Secrets:”

“Most SSDI recipients receive between $800 and $1,800 per month (the average for 2020 is $1,258).”

It also does not necessarily have to be your sole source of income – you can earn up to $1,260 additional wages (up to $2,110 or more per month if you are blind) without losing your benefits.


Are You Eligible?

How can you tell if you are eligible for disability benefits? According to the Disability Benefits Center, lupus is specifically listed as one of the diseases that can make you eligible for benefits. It also comes along with other eligible conditions. These include comorbidities such as arthritis, organ damage, and increased sensitivity to injury and infection.

The Blue Book, also known as the “Disability Evaluation Under Social Security” lists out what qualifies as a benefit-eligible disability and what doesn’t. You can learn more about whether you are eligible by accessing the “Blue Book” here.

Also, if you can prove quality of life changes such as persistent weight loss, fever, fatigue, or other symptoms, then you may still qualify.


Receiving benefits while employed

Being employed does not preclude you from receiving benefits. If you are currently working, you can still be eligible if you make less than $1,130 per month – the upper limit for being “Gainfully Employed.”

You also needed to have worked a certain amount, if you were able to work, and you must show that you will be unable to work (or find what the SSA defines as ‘gainful employment’) for a period of 12 months due to your lupus. Age and whether you receive other social security benefits is also factored into the decision to approve your claim.

Your employment history can go either way towards approval. Long employment history can work in your favor (the SSA sees this as a sign of reliability). But, being out of work can imply a dire need for benefits.
Spouses (including divorced spouses) and children (adopted, biological, stepchildren or even dependent
grandchildren) are potentially entitled to benefits as well.


Can you lose disability benefits?

Yes – but it isn’t easy. If you are “Gainfully Employed” or no longer considered disabled (after a review), you lose your benefits. Depending on your status, you may be reviewed at a period of 6 months to 7 years. However, the SSA does appear to recognize that some additional income might be needed and they do create incentives to re-enter the workforce.

If you are a student, you can earn up to $1900 a month without risking losing your eligibility.

Additionally, some plans allow you to work while receiving a reduced benefit. Up to $85 per month of your income is not counted against you. Then, every dollar you earn over that each month reduces your payout by $0.50 (50 cents).

You are allowed a trial period of nine months when returning to the workforce. It can be spread out over five years of part-time work. During this trial period, you receive your benefits. After the trial period, SSA assesses your need to see if the benefits are decreased or revoked.


Disability benefits vs. medical vocational benefits

If you are still able to work above the level that disability benefits would normally allow then a medical vocational benefit might be the way to go instead. In this case, all that you need to prove is that you can no longer work “in the capacity that you used to be able to work.” That could mean:

  • reduced hours,
  • forced to change jobs to something lower-paying due to your disability,
  • or restrictions on your energy levels or movement that make working your job much more difficult.

Your medical conditions, job, age, work history, educational background, and skills are under consideration if you apply for medical vocational benefits.

The main difference between the two is that you can get a medical vocational allowance if you are working. Even if your condition is not severe enough to appear in the “Blue Book”. It covers a broader range of people as well.

If disability benefits seem out of reach, medical vocational benefits are a good second option.


Making benefits work for you

Payments will not start immediately. According to Everyday Health, it can take 3-5 months for your first check to be sent to you. After a potentially long wait to get approved, this additional waiting can seem interminable. Keep that in mind as you budget.

Find strategies to help lower your expenses while taking care of yourself. Health insurance is a big part of keeping your costs low, and you may be happy to know that you will automatically receive Medicare coverage after two years of received disability benefits (if you are not already covered).

Also, You can read more about getting help affording lupus medications here.

And, above all, continue not giving up – you are not alone in this fight!

Comments (6)

6 thoughts on “Disability Benefits, Supplemental Income, and Lupus

  1. I have SLE and I’m only getting worse with organ failure issues and my latest issue was I went into respiratory failure 4 days after having over half my stomach removed. I also have a regurgitating mitral valve that’s only getting worse. I’ve been denied disability 2 times now and I’m hopeful the 3rd time is a charm. Eric Yocum is a very good disability attorney for someone who was asking for a good attorney.

  2. In the United States, the government offers benefits programs to the disabled called Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). These programs, while similar in name, are substantially different in both their requirements and the type of aid they offer.

  3. Getting disability must be harder in other states. I have SLE, Rheumatoid Arthritis, and Sjogrens, with kidney disease and other complications. When I applied I did it myself, no lawyer, and I went to each doctor before to ask them to document specifically why I should receive disability. This included my regular doctor who is an internist, my pain doctor who provides my pain meds and procedures, my rheumatologist, and my kidney doctor. Each of them was very willing to document why I needed to stop working and receive social security. I filled out the paperwork expecting to be denied the first time, but, no, I got it the first try. They sent a letter the first of the year saying they were going through records again to see if I still qualified, but I haven’t heard anything else, and it’s been five months.

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