How can I work and not lose my Social Security Disability Insurance?

SSA does actually have an entire program to help people with disabilities return to work.  It is called Ticket to Work. 

Whether you are on SSI or SSDI you can request a Ticket to help yourself learn new skills, find work, or rethink your career goals. It’s a voluntary program that will help you with your next steps, whatever they may be.

Your other major resource is The Red Book which guides you through all rules around working while using SSI or SSDI.

It is written in government legalese, which may feel confusing, but it is the authority on precisely what the rules are and is the best resource for you to use to get answers to your specific questions.

The rest of this post discusses the most common and important programs to the best of my understanding.

Basic rules of SSDI

The SSDI program is not needs-based, so once you are deemed eligible due to your disability, the only way that you lose coverage is if you recover from your condition or if you earn enough money that SSA no longer considers you unable to work.

Your SSDI award is based on your income history, so the size of your payment is not related to where you live. Your income will remain the same whether or not you are married, and whether or not you have access to additional money.

The nice part of this is that you can more easily budget as you either get your check or you don’t, there is no partial payments or payment reductions due to assets or income.

The challenge is that this means that if your monthly check is worth more than your substantial gainful activity(see below), earning your way out of SSDI eligibility may leave you in a financially worse situation, on top of putting a time limit on your Medicare eligibility.

It’s really important to work within the rules so that you can control when and if you earn your way out of SSDI eligibility.

Trial Work Periods 

Each person on SSDI has a Trial Work Period(TWP), which is a period of nine months(not necessarily consecutive) in which the income you earn does not prevent you from collecting your benefits.

This is designed to encourage us to take on employment and see how it goes for a reasonable period of time before we need to worry about losing benefits.

Trial Work Periods can be very helpful, as they help reduce those fears of losing the supports that it now often takes years of fighting to receive.

You are encouraged to report your earnings monthly when you work, which should clarify what months count, but if you fail to for any reason(I know I did because I was absorbed in the whole trying-to-work thing), the social security administration will look over your work history and estimate what months were part of your TWP.

If they do it this way, it’s very difficult to correct.

Also, while it is clear that you have 9 months in your trial work period, the wording is that these are calculated on a rolling 5-year basis, which appears to mean that they start those 5 years the first month you earn over their designated magic number, called a Trial Work Level(TWL).

If your income is under their Trial Work Level, it doesn’t count as part of your trial work period.

This year(2022), the Trial Work Level is $970/month. 

If your earned income is under $970/month, you can do that work without using up your trial work months, so you could do this for as long as you wish with no risk to your benefits.

Every month you earn over $970/month counts as a trial work month.

There are additional supports, including an extended period of eligibility(EPE) which allows you to get monthly SSDI checks any month your income is under SGA after your trial work period ends.

This coverage lasts the first 36 months(3 years) after the last month of your trial work period(TWP).

After that ends, you remain eligible for expedited reinstatement if you become unable to work.

I actually used the expedited reinstatement in order to be covered again by SSDI when I worked after my EPE ended.

I used my initial trial work months with each job I took, so I quickly used them up without a real plan. This time around, I’m being much more deliberate about my trial work period.  

Substantial Gainful Activity

The most vital acronym to understand is SGA(Substantial Gainful Activity)

SGA values change over time, but the term is defined as earning a significant enough income to reduce or remove eligibility for SSI or SSDI.

The rules are different for blind vs non-blind individuals. In 2022, SGA for the blind population is $2260, while SGA for all other disabled individuals is $1350.

You are no longer eligible for SSDI after you start earning over SGA and have used up your Trial Work Period.

Substantial Gainful Activity is another ‘magic number’ and one you simply have to recognize and respect.

The good news is that there are some things that can be subtracted from your income so that you can actually earn more than SGA in a month if you have the right documented expenses and consistently prove it.

The first part of this is understanding the definition of earned income.

If you are working for an employer(getting paid a taxable hourly wage or annual salary), then your Substantial Gainful Activity is calculated not by looking at your paycheck, but at the number above it, your gross income.

This is what you earned before the taxes were taken out. That’s the number they base SGA on(after subtracting certain expenses, as described below)

If you are self-employed or doing gig work(paid per transaction), your SGA is based upon your net income.

Net income is your income after the expenses are removed. If you are self-employed, any business expenses can be subtracted from your gross income before your SGA is calculated.

As a blogger, for example, the cost of purchasing and maintaining my site is subtracted from my income before SGA is calculated.

Impairment-related Work Expenses

When you work, many of the costs related to your condition can also be subtracted from your income before calculating SGA.

This goes by the acronym IRWE, and refers to everything that enables you to work, even if you also use it at home.

Examples may include your out-of-pocket payments for durable equipment(like a wheelchair), equipment to help work around an impairment(like a specialized computer), and, if needed, a home health aide to prepare you for work.

It also includes your costs associated with being able to travel to and from work, such as car modifications, ride-sharing, or daily taxi or uber payments for transportation to and from work.

For these, the entire cost isn’t necessarily considered but the difference between what it cost, and how much you would have paid for a similar service if not for your condition.

For example, if you cannot take public transportation, that cost is subtracted from the cost of your transportation service, and your IRWE value for transportation is that difference.

Determining your IRWEs can feel daunting, and may need to be recalculated on a somewhat regular basis as your expenses change, but depending on your condition and limits, it’s possible to do a job that pays much more than SGA and remain eligible for your benefits by using your IRWE deductions

Plan to Achieve Self-Support

This program is most useful for people whose SSDI income is close to, but above, SSI levels.

PASS is basically a savings program that allows you to work with a supervisor, social worker, or other professional to develop a financial plan to help you achieve your work-related goals and eventually earn your way out of eligibility for support.

There are also designated PASS specialists hired by Social Security to double-check proposed plans and work with you to make sure that they are achievable and acceptable. 

PASS allows you to put aside a portion of your monthly check towards employment-related goals, like paying for a course or certification, buying a necessary piece of equipment that will enable you to work, or otherwise directly assist you in finding or keeping a job.

The advantage is that any money you put aside through your PASS account is no longer counted as unearned income, which can allow you to be dual-eligible(on both SSI and SSDI) while you are participating in the PASS savings program. You won’t get much money from this, but it will give you Medicaid coverage and may make it easier to get SNAP support.

ABLE account

This is something you can use whether or not you are working.  I’m mentioning it here because it is another way to reduce the income numbers used in your calculations.  

ABLE accounts are not yet available to everyone with disabilities but are very useful if you are eligible.

If you became disabled prior to the age of 26(your current age doesn’t matter) and are still disabled you can start an ABLE account.  

The money in the ABLE account must be used to support your disability-related needs, but that includes things like food and housing, so it isn’t much of a sacrifice.  

If you are eligible to create an ABLE account and thinking about going to work, I believe you can deposit part of your paid income into your ABLE account each month and that is not included in the calculations of your assets. Unfortunately, it is still considered earned income and remains taxable.

I know that you also can have money deposited into your ABLE account by friends and family(so this is a way to get around having a parent or sibling set up a special needs trust for you), as long as the total gifted this way stays under $16,000 a year(this amount may change!).  

While your SSDI benefits are not affected by your assets, this may be a way to help yourself be eligible for income-based support programs, like SNAP or LIHEAP.  

Conclusion: You can work and maintain your SSDI benefits

Doing so will allow you to commit to work you find meaningful and helpful in giving you a sense of purpose while allowing you to continue getting health insurance and a monthly check to help you keep yourself afloat. 

This is a balancing act and requires you to make some regular calculations and possibly be minimally employed.  

It is also possible to have a higher regular income and eventually earn your way out of eligibility for SSDI support, with a multi-year safety net should your condition worsen or your life-goals change. 

While life-long support, if you are higher-earning, is not guaranteed, there are ways to keep yourself protected and cut your income back down to eligible levels to maintain your insurance if other options become unavailable. 

The better you know the rules, the better you can control these variables and the abler you are to protect yourself.  

I wish you the best in deciding what solutions will best suit you in your career decisions, and would love to hear about how you’ve managed this balance for yourself!