Subscribe now

In August 2026, I published a piece called Upon Review, I am Still Disabled, in which I shared what it was like to go through a Continuing Disability Review process for Social Security Disability Insurance (SSDI) benefits. It became one of my most popular posts on Substack, and when I shared it on LinkedIn, it gained a lot of traction there as well. Responses came from people who have also been through a review, as well as those interested in a behind-the-scenes look at that process.

Today, we’re taking a deep dive into the reality of living on the financial benefits of SSDI, if you’ve received them and are able to maintain them.

Are Social Security Disability Insurance (SSDI) benefit payments enough for the recipients to live on?

In short, the answer is no. “In most states, someone whose sole source of income is SSDI would earn only enough to cover between 40% and 50% of living expenses.”1

As someone who has been an SSDI beneficiary for nearly 5 years, I have mixed feelings about that statistic. I’m filled with gratitude to receive these benefits. I also desperately wish the benefits allowed me, and all other recipients, to feel financially secure, which I can confirm they do not.

In this article, we’ll: take a look at how SSDI benefit amounts are calculated; break down my real SSDI income and expenses; explore additional costs of disability; and examine how some SSDI recipients modify their behavior to account for a financial shortfall.

How SSDI Benefits are Calculated

“In 2026, the maximum possible monthly Social Security Disability Insurance (SSDI) benefit is $4,130.50. This amount is only available to individuals who had very high lifetime earnings and paid into Social Security over many years. However, most beneficiaries receive much less than the maximum. As of 2026, the average monthly SSDI benefit is approximately $1,630. Your individual benefit amount depends on your work history and how much you paid into Social Security through payroll taxes.”2

If you want to guesstimate how much you would receive in SSDI benefits, if you were in the position to need to apply for them, I found this calculator to be a helpful tool. You can plug in your own numbers to get a sense of the range your monthly benefits would fall into. Just keep in mind that if you were working as a 1099 Independent Contractor, for example, you were not paying into Social Security, so that income would not be factored into the calculations.

This video also provides great clarity on the process:3

Benefit recipients typically receive an annual cost of living (COLA) increase, which is announced in the fall and begins in January.

A Breakdown of My SSDI Benefits

Per the calculation rules, I have been awarded a total monthly sum that is based on 16 years of paying into the system. So, I start each month with this nut, this 100% benefit, this income. Let’s dig into how it immediately starts to flow back out, in the form of medical expenses.

Additional Necessary Medical Expenses

First, what I receive in my bank account already has the monthly Medicare premium deducted. In 2026, that amount, for every Medicare recipient, is $202.90, which adds up to $2434.80 for the year.

If you have a Medicare Part D drug plan premium, you can choose to pay for it directly or to have that deducted from your monthly SSDI benefits before they hit your bank account. In 2025, I had a drug plan with a premium and chose to have it deducted in advance. This year, I chose a plan that does not have a premium, so there are no additional deductions. Open enrollment is currently under way, so I may choose something with a premium again next year, depending on what my coverage options are.

I’ve categorized both of those expenses as “Additional Necessary Medical Expenses.” A category that also includes my annual Medicare Part B deductible ($283.00 in 2026), out-of-pocket prescription drug costs (which are capped at $2,000 for this year), supplements, medical supplies and equipment, and anything else health-related that my medical situation forces me to consider a non-negotiable. This category adds up to 37% of what I’ve received as income.

Medicare Supplement Plans (Medigap) vs. Medicare Advantage

When you become eligible for Medicare as an SSDI beneficiary (and when you become age-eligible), you have to choose between a Medicare Supplement Plan and a Medicare Advantage Plan.

A Medicare Supplement Plan, which is also referred to as a Medigap plan4:

“covers the gaps in coverage left by Original Medicare Part A and Part B. It is designed to cover copays, coinsurance and deductibles not already covered. It has no out-of-pocket max, but most costs are covered.

You must have Medicare Part A and Part B to be eligible for Medigap.

Here are some situations when a Medigap plan may be your best choice:

• You are willing to pay a higher premium for predictable costs

• You don’t want to be confined to a network of providers

• You have chronic conditions that cause expensive gaps in Original Medicare

• You see specialists and don’t want to bother with referrals”

Within Medigap, you have tiered options for coverage to select from, and the plans are lettered from A through N.

On the other hand, you have Medicare Advantage plans5:

“These plans are an alternative to Original Medicare. Medicare Advantage plans set a yearly out-of-pocket max and typically require you to use providers in the plan’s network.

If you have insurance coverage through your employer or union, check to be sure you won’t lose that coverage if you enroll in a Medicare Advantage plan.

Here are some situations when a Medicare Advantage plan may be your best choice:

• You want low to no premiums

• You want some extras like dental, vision and hearing coverage

• You don’t mind a limited provider network or referrals”

Medicare Advantage is much more like an HMO you would get through the Health Insurance Marketplace or your employer. 55% of all Medicare beneficiaries are enrolled in Medicare Advantage plans, with one of the driving reasons being the lower price point.6

Despite the availability of low-cost Medicare Advantage plans, I chose Medicare Supplement Plan G, which is one of the most expensive options. As a result, 45% of my income this year is going directly to my Medicare Supplement Plan.

An absolutely enormous chunk of change. And a decision I did not make lightly.

I chose Plan G because, by the time I officially became disabled, I had been juggling multiple chronic illnesses for nearly 15 years. During that time, I had a few different HMOs and PPOs, and I was so mentally and physically exhausted from constantly arguing about claims and paying co-pays and other out-of-pocket expenses I couldn’t plan for in advance that I was willing to make a financial sacrifice to minimize those stressors. I also wanted to be able to see any doctor I needed to, in any location, without worrying about networks and referrals. And that strategy has worked!

My Supplement Plan has eliminated about 98% of the administrative nonsense I used to deal with on a daily basis with my health insurance plan, and I can only think of 2 times in the last 5 years that I’ve unexpectedly had an additional out-of-pocket expense that neither Medicare nor my Supplement plan covered. And one of those was due to a coding error by my Primary Care Physician’s office that was later corrected.

Paying for Everything Else

So, a combined 82%(+) of my SSDI benefits income goes directly back out to medical expenses. 37% for “Additional Necessary Medical Expenses” plus 45% for my Medicare Supplement Plan, without accounting for any other type of expenses.

What remains is 17% for every single other cost I incur for the rest of the year.

That 17% needs to cover everything from rent or mortgage to insurance, car payments, gas, groceries, cell phone, utilities, etc. Never mind if an unexpected emergency cost, medical or otherwise, arises. And it certainly doesn’t include anything fun. For argument’s sake, let’s say I was receiving the average SSDI monthly benefit of $1630, or $19,560 for the year. 17% of that is $3325.20. It would be impossible to live solely on that.

And despite the cost-of-living increase that SSDI recipients received for 2026, my available spending amount for non-medical expenses this year is actually lower than it was in 2025. Because the government increased the Medicare premium nearly as much as the cost-of-living increase, and every year my Medicare Supplement Plan increases too. This year, the rate of increase was more exorbitant than most. So, only slightly more income and much greater expenses leaves behind a greater deficit.

Don’t Forget to Add the Disability Tax

It is generally more expensive to live as a person with a disability than someone who is non-disabled. The “Disability Tax” is a widely used phrase to acknowledge this fact.

My disability tax is pretty high. I spend a lot of money on mobility aids and medical supplies. I’ve written about the very expensive process of buying a modified vehicle; an expense I was only able to afford because of family assistance. I keep a very detailed personal budget so I can track where every dollar goes and what my shortfall will be each month. I have special lines built into that budget for medication, supplements, mobility aids, medical equipment, and every other expense I’ve categorized as an “Additional Necessary Medical Expense.”

But the Disability Tax isn’t just financial. The emotional tax on the disabled is made greater due to this financial burden. It is made even higher by all of the extra planning that goes into every outing or trip we take, the additional factors we need to consider, and the time spent to accommodate for those challenges.

And so, we begin to modify our behavior. Sometimes in imperceptible ways at first, but the end results can be dramatic.

Behavior Modifications Driven by Finances

The Patient Advocate Foundation conducted a 2026 Survey7 on the financial burden for Medicare recipients8 that I find instructive about the cost of being disabled, including my own situation.

33% of patients experienced challenges in accessing prescribed care of treatment due to copay, coinsurance, or deductible cost in the past 12 months. And 85% of patients use at least one or more coping mechanisms to deal with rising healthcare and medication costs.

Among those, many are modifying their financial behaviors. 46% are using charitable co-pays, 29% are incurring credit card debt, 15% are utilizing Patient Assistance Programs (PAPs), and 15% are setting up payment plans.

However, it’s the behavioral modifications that resonate with me even more. 23% make lifestyle changes. 16% switch medications. Another 15% cut those supportive medications entirely. 14% delay their medical care.

Translation: in order to have medical coverage, many of these patients are actually sacrificing their health due to the cost.

I am part of the 23% who made lifestyle changes. I used to live by myself and was a homeowner for 10 years. Now I live with family, in order to minimize my costs, which has been an extremely difficult change for me, no matter how grateful I am for the help. I go out to events significantly less than I used to. Other than some impulse buys from the LOFT, birthday and holiday gifts for my nieces and nephews, and the occasional trip to visit friends and family, I keep my expenses very low. And I have had to make some really, really difficult decisions to achieve that.

Which is why I am also part of the 14% who delay their medical care. I’ve got a few things right now that I’d like to be able to do to improve my health but have been putting off due to the cost. And I know my health situation may be made worse by making medical decisions based on finances. I wrote about what happened when this unknowingly happened to me, more than once, when it came to testing for Lyme Disease.

You can work while receiving SSDI benefits, as long as your monthly income is less than $16909. And if your physical capacity fluctuates, as mine does, there is a Trial Work Program, which offers you 9 months (over a rolling 60-month period, in which months do not have to be consecutive) to see if you can maintain an income level and sustain the work. If you can, you cycle out of the benefits program. If not, you retain your benefits and nothing changes. “In 2026, any month in which earnings exceed $1,210 is considered a month of services for an individual’s trial work period. In 2027, this monthly amount increases to $1,270.”10

Many people also choose to do crowdfunding, apply for grants, or make the same kind of tough decisions I have to supplement their benefits.

Conclusion

The next time you meet someone receiving SSDI benefits (or SSI or Medicaid or some other form of government subsidy), please don’t assume they are being lazy, happily accepting some kind of fantastic government handout that’s making it possible for them to not work and giving them a great life.

For most, myself included, SSDI benefits are a lifeline and a survival tool. Never a luxury. That’s the cost of being disabled.

Subscribe now

Each issue of “What’s Her Problem?” includes questions for further discussion. Leave a comment below!

This week’s questions:

How do you budget for your medical expenses? What lifestyle modifications, if any, have you had to make to accommodate for the disability tax?

Leave a comment