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It can be a hard decision to make.

There are actually two different programs that are often referred to as disability, and while you don’t need to choose which to apply for (they share the same application and are both run by the Social Security Administration), it is important to understand what they are and how they work.

There are also short-to-medium term additional forms of disability coverage provided by some employers and some states. Most long-term disability programs provided by employers eventually have their clients apply for SSDI.

Why would you apply for disability?

Generally, disability coverage is for people who become disabled during the “working years” of their lives—so between their 20s and 60s. One of the major disability programs, Supplemental Security Income (SSI) can also be used for people born with disabling conditions—either in their childhood if their families are low-income or after they turn 18.

In the US, “disability” support is almost inextricably linked to the inability to work, as our disability programs are based on not only the criteria of being disabled but also on your inability to earn “substantial” income.

In order to be eligible for either program, you need to both be “disabled enough” for eligibility (which means one or more doctors need to document your limitations and social security needs to agree with their assessment), and your disability must prevent you from being able to earn “substantial” income, which is a moving target that changes annually, but is currently a bit over $1,300/month.

No matter how well documented your condition, if your income is over their magic number, you are not eligible for any support for the social security administration.

Also, just because your income is under their magic number, that isn’t enough—your condition(s) must be considered the reason you cannot earn money.

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The grief and pain that accompanies this decision

Deciding to apply for disability is an acknowledgement of loss. You are suggesting or implying to yourself that not only can’t you work right now because of your condition, but also that you aren’t likely to return to work anytime soon.

In order to apply for disability, you need to prove that either you have not been able to do “substantial” work for over a year, or you won’t be able to return to work for at least a year following whatever took you out of work in the first place.

For many of us, work and employment are a very basic part of our identities and the structure that guides our lives—so even if we might not always enjoy our jobs (which some of us absolutely do), they are a large part of who we are and a substantial chunk of how we spend our days.

Losing that part of our identity is painful.

It’s even more painful because we’re not choosing to leave our jobs—it’s not something we’re necessarily doing on our terms—we’re losing our ability to work to an accident, injury, disease, or condition.

I remember how hard it was for me when my Functional Neurological Disorder (FND) relapse occurred.

I know being knee-deep in fish does not necessarily sound fun, but I loved it!

It was actually triggered by losing my job—I’d been working as a fishery observer on the Gulf of Mexico and the funding for the program fell through.

I spent the next several months anxiously awaiting word on whether or not they’d been able to arrange some sort of solution.

During that wait, I developed urinary incontinence and my movement symptoms returned.

I was able to find work again a few months later, but by then my symptoms had made it challenging to do the work I was hired to do.

After losing two jobs in five months specifically due to my symptoms, I recognized that I couldn’t immediately return to work—that I needed to take some time to really focus on caring for myself and finding myself an alternative career path.

My father’s death a couple of months later sealed the deal—I knew that I couldn’t even think about work with how severe my symptoms were.

I applied for SSDI when I was 23, and while I absolutely have worked since then, I’ve never worked more than part-time for more than a few months.

Ableism at work: disability and failure

Deciding to apply for disability doesn’t just mean getting help—it also means admitting that you can’t do what society teaches us is the primary responsibility for us at our age range—to work and be “productive” members of society.

Applying for disability is an acknowledgement of failure.

It’s recognizing that you can’t perform your “key function” in society. You can’t do the thing that tends to define people’s lives.

Not only that, but this is occuring because, in some way or other, your body has failed you.

You aren’t choosing to quit, but due to something (usually) outside of your control, you can no longer do what you thought you would be doing.

a red stamp is visible with the word 'failed' on it. Just below it is the mark it made, in red ink, which also reads 'failed'
Many aspects of the disability struggle, especially the process of applying, can make you feel like a failure.

Becoming disabled is also often viewed as a moral failing itself, and there’s a lot of grief and pain that often accompanies becoming disabled, which makes this loss of the ability to work even more painful.

Society in general takes a dim view on getting disability as well. All too often, disability and social programs designed to help poor people have a lot of stigma and shame attached to them, with most people viewing being on those programs as a sign of failure.

Be aware that folks who don’t really see or understand the impact your condition has on you may look down on you for applying or may become uncomfortable if the topic comes up.

You may also have absorbed this idea, and view it in this light. I’m here to tell you that these programs exist for the purpose of helping you, and that being disabled isn’t shameful—society is ableist.

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Acknowledging reality

However, deciding to apply for disability itself isn’t a bad thing—or an irresponsible action.

It’s really the result of careful consideration on your part.

If you really can’t perform substantial work due to your condition and you’re unlikely to be able to do so in the near future (or haven’t been able to for some time and can’t see that changing soon), then it only makes sense to apply for support.

Social Security Disability Insurance (SSDI) is an entitlements program for all US citizens with a recent and substantial work history. Let me repeat that: it’s an entitlements program.

That means that by working prior to becoming disabled (as long as you worked enough to earn the appropriate work credits) you earned the right to social security retirement benefits—and your disability means that you can start collecting those retirement benefits early.

black man writes in a notebook at his work station
SSDI benefits are basically you collecting your retirement benefits early, based on your recent work history.

As I mentioned, I was able to get these benefits at the age of 23, since I’d started working while in high school and worked every summer.

While I was in college, I also worked part-time as part of my work-study program.

Somehow, it all added up to “enough,” and at that time, I honestly assumed that I would be able to recover from my FND enough to eventually work full-time again.

While my assumption was incorrect (at least so far), I have had periods where I was able to work a fair amount and I have been able to build up career experience.

Even being on the program for as long as I have, I still have been able to find a sense of purpose, find work I’ve enjoyed, and feel hopeful about my future.

Deciding to apply for disability is about acknowledging your very real limitations that are caused by your condition.

Pretending that it’s all magically going to go away one day is much more harmful to your long-term mental and physical health—as is pretending that you can keep working when you can’t.

What happens if you have a spotty work history?

If you do not have a current work history (full-time employment in the previous five years), or you don’t have enough work credits, then you may only be eligible for SSI coverage.

While not an entitlements program (it’s considered a social welfare benefit), it remains an option to support yourself when you don’t have many others.

Not only do most people who become too disabled to work in childhood end up on SSI, but many people with chronic health conditions who were never able to accumulate the necessary work credits (or who didn’t apply until long after they reduced their hours) also use SSI.

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SSI is available for anyone who is disabled and low-income, including children.

At some point, our bodies give out on us, especially when they’re consistently being pushed too hard—so recognize that programs like SSI are there precisely because we may need them.

One of the struggles Al and I faced was whether or not he would need to get SSI after he shattered his hip.

Al was one of many who lost a career when the 2008 bubble burst, and he really struggled to find work afterward.

When he finally started to regain his footing, he received a traumatic brain injury (TBI) during a car accident that kept him from contemplating work for another year.

When he shattered his hip a few years ago, his prior ten-year work history was relatively spotty, which left him ineligible for SSDI.

We discussed his applying for SSI, but after some consideration, he decided he’d prefer to focus on returning to the workforce, even though we knew that he’d have at least some additional pain the rest of his life.

He was able to go through some additional training through unemployment/DVRS and then landed a job at a gourmet market near us, doing inventory management work.

I am proud of him for this decision, but I also would have supported his decision to apply for SSI if he felt he wouldn’t be able to return to work.

You need to be thoughtful about what you physically, mentally, and emotionally can and can’t handle.

If working full-time or close to it is going to make you worse (or is simply impossible), then applying for disability is absolutely the right move for you, and should help you in the long run.

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Preparing for the process

There are a few emotional and practical stumbling blocks on the path to applying for disability, and I want to prepare you for them.

The first one I’ve gone over—which is the sense of loss that accompanies the decision to apply: recognizing that you aren’t going to have anything resembling full-time work anytime soon.

It is a loss and should be recognized as such. Grieving it is appropriate and deserved.

The second, related concept is the loss of your identity as a “healthy” person.

Again, depending on the nature of your condition and how long you’ve been dealing with it, this may be relatively simple or extremely difficult.

Recognize that applying for disability is going to bring up some of these emotions.

Applying for disability is one of those milestones—you can’t be both completely healthy/abled and collecting disability benefits.

The practical stumbling block is this: you need to prove that you can’t do substantial work—and that that’s going to continue to be the case.

Four disabled people of color face each other in a open circle during a meeting. Two Black people sit on a couch with a cane leaning off the side while a Black non-binary person stands with a tablet and cane. A South Asian person in a wheelchair takes notes.
Having a disability doesn’t mean that you can’t work, but going onto disability indicates that you can’t work much.
Image provided by Disabled and Here: https://affecttheverb.com/DisabledandHere

It’s going to be a lot of paperwork.

You’re going to need to have your doctors back you up, and you’re going to need to write out, in detail, what you can and can’t do, and why it prevents you from working.

It’s going to be an emotional journey.

It’s going to take time.

When I applied over 15 years ago, I was notified about 8 months after I got my application in.

That was considered blazingly fast then, and things are much slower and the rejection rates much higher now.

You can’t expect to get disability anytime soon.

Anticipate that it will take at least a year or two and you’re less likely to be disappointed.

As you go through the process of applying for disability, you’re likely to get negative responses and may be treated poorly by the people involved in the process.

Why?

Because you’re applying for disability.

Deciding to apply for disability is a personal decision. And it’s yours to make.

It’s also the responsible decision to make when trying to work is only going to make you worse.

You deserve quality of life—and applying for disability is the right step to take when you can’t work (or can’t reliably work enough).

That’s what the program is there for, and you deserve that support too.

What do I get for my efforts?

So, with all the struggle it took to reach this point of consideration, and with all the hurdles you’ll need to jump and the stresses you’ll need to wade through, what are you going to get if you finally are declared eligible for benefits?

Well, both SSI and SSDI provide two basic supports: monthly income and guaranteed health insurance.

If you are eligible for SSI, you’ll get a monthly check. The precise base value will vary by state (some states add to the base federal rate, which I believe is $750/month).

If you work, they will deduct some money from the payments ($1 for every $2 you earn over $85).

There is a ceiling to how much you can earn and still get benefits.

You also will be eligible for Medicaid coverage.

Generally, Medicaid covers all or most of your covered medical costs (and there is no charge to you for having Medicaid), though they often provide somewhat limited options for care.

Also, by being on SSI, you’re categorically eligible for SNAP and LIHEAP benefits.

This means you’ll also have your heating and energy bills discounted and get a monthly stipend toward your food expenses.

Also, you may be categorically eligible for other low-income services such as reduced-fare transportation tickets.

Overall, being on SSI guarantees you a small but reliable income, health insurance, and easy access to most low-income supports.

Your very basic needs will mostly be met, which is much better than the alternative.

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If you get disability, you won’t be rich, but you will have a reliable source of income and guaranteed health insurance.

If you are eligible for SSDI, you’ll also get a monthly check.

The amount will vary (I believe the range is around $600–$3,000/month) based primarily upon your recent work history.

Most people have less than $2,000/month coming in.

If your SSDI check is low enough, you may also be able to get SSI coverage.

You’ll also be eligible for Medicare coverage, which starts about two years after the onset of disability/date of your application for disability.

In most cases, by the time you’re granted SSDI, most of that waiting period will have passed.

Because Medicare is so widely used (retirees also use Medicare), you often have a wide selection of doctors and pretty decent coverage (the main gaps are around supports needed only for people under 65, such as prenatal/maternity care).

There are monthly fees associated with Medicare, which you can either pay directly or have deducted from your monthly check before you receive it.

As long as you stay under substantial gainful activity (that $1,300ish amount I mentioned earlier), you can work while on SSDI without your check being reduced.

However, if you earn your way out of eligibility, the checks stop altogether, and your Medicare eligibility is given an end date.

Basically, getting on these programs will give you some much-needed stability. You are guaranteed some form of healthcare so that you can better manage your condition, and a steady, reliable income to help you survive and give you some peace of mind.

I know that it was worth the effort for me.

Only you can decide if it’s the best option for you.

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