Life with MS

Working While Receiving Social Security Disability

By Deborah Kim Lee and Phillip D. Rumrill, Jr.

For some individuals with MS, receiving a disability payment from the Social Security Administration (SSA) each month provides welcome stability after living with the uncertainty of MS and leaving the workforce. This is the case for Bridget, who has has been living with MS for 15 years. She describes her experiences of struggling to find effective medications after being diagnosed, leaving her job because of fatigue and pain, and eventually living in rotating homeless shelters.

After the tedious and drawn-out process of being found eligible for Social Security Disability Insurance (SSDI) benefits, the payments have helped Bridget rent her own apartment, cover food expenses, and pay for an adapted bicycle so she can get to appointments instead of waiting for unreliable transportation in her small town. However, Bridget has recently thought about returning to the workforce after finding medication that has stabilized her condition. She finds the rules and regulations of the Social Security Administration to be utterly confusing, and she is fearful of losing her benefits. Bridget is not alone in this confusion.

Ticket to work

For people with MS who are trying to understand the pros and cons of going back to work while receiving SSDI or Supplemental Security Income (SSI) benefits, there are programs, set up by the SSA, that offer work incentives to assist in doing exactly that. These include the Ticket to Work program. According to the SSA, the goal of the Ticket to Work program is to help promote greater independence and decrease reliance on disability benefits by assisting beneficiaries in obtaining employment.

This is a voluntary and free program that allows SSI and SSDI beneficiaries a choice of employment services, vocational rehabilitation services, and other services that may be necessary to find employment. This program comes with no risk of losing Medicaid or Medicare coverage. Individuals with disabilities can choose to assign their tickets to an Employment Network (EN), which will help arrange and assist in selecting services that will help with employment. SSA will pay approved ENs when the ticket holder maintains employment and reaches various levels of employment and earnings.

A directory of Employment Networks can be found at or by calling 866-968-7842. One thing to keep in mind is that, while individuals are participating in Ticket to Work, the SSA will not conduct a reconsideration of disability status or medical review. Another important resource that individuals should consider is the Work Incentives Planning and Assistance Program (WIPA), which was created under the Ticket to Work program. WIPA provides free benefits counseling for individuals receiving SSI or SSDI. Individuals are educated about the effect of work on their benefits and other programs, such as Section 8 housing and SNAP food benefits. These programs exist in every community and provide support in navigating the rules and regulations of Social Security in order to successfully return to the workforce.

Trial work period

For individuals who want to test out their ability to work and still receive benefits, the trial work period presents an excellent opportunity. The trial work period allows for nine months of unlimited earnings in a five-year period before benefits are discontinued. The nine months aren’t required to be consecutive months, so this provision gives individuals a chance to stop and restart without any penalty. As of 2019, any month in which earnings exceed $880 is considered a qualifying month that is counted against the nine-month trial work period.

Substantial gainful activity (SGA)

If you are receiving SSDI, you are probably familiar with the term Substantial Gainful Activity. SGA is the amount of monthly earnings used to determine eligibility for federal disability benefits. If you earn under $1,220 per month (the established cutoff for SGA for 2019) or $2,040 per month if you are considered blind by SSA, you will not need to worry about your disability benefits ceasing. However, if your earnings are greater than these amounts, you will be considered employed by SSA and benefits will cease following your trial work period.

An important note: Whether you receive SSDI or SSI, it is very important to let Social Security know about your work activity and wages earned. A benefits counselor or Ticket to Work service provider can help explain the reporting requirements and help you with reporting earnings to Social Security.

Impairment-related work expenses

Impairment-related work expenses allow individuals to deduct expenses that are necessary for work. Let us suppose that Bridget requires accessible transportation that is not covered by her new employer. In this case, Bridget would be able to deduct these expenses from her gross income, thereby reducing the likelihood of reaching her SGA.

Plan for achieving self-support

For individuals receiving SSI benefits, the Plan for Achieving Self Support is a work incentive that includes creating an individualized plan to meet specific career-related goals. For example, if an individual requires more education or specific skills for a job, then the individual will be allowed to set aside income and resources to meet that goal. However, according to the SSA, a caveat exists in that the goal must be a job in a professional setting that will produce enough income to decrease the reliance on SSI payments.

Final thoughts

For individuals like Bridget who receive Social Security disability benefits, the desire to return to work is a positive indication of community engagement. In fact, more than 90 percent of individuals with MS have worked at some time in their lives. A job provides not only financial incentives, but also contributes to an individual’s self-image and provides an opportunity to make a meaningful contribution to society. When a diagnosis of MS appears and threatens employment or presents a setback, rest assured that there are programs set in place by the SSA that can help you try out employment without worrying about losing benefits. Taking time to understand these programs and participating in benefits counseling will help SSI and SSDI beneficiaries make wise choices about whether or not they should go back to work.

Ticket to Work

* All SSDI and SSI beneficiaries can benefit from the Ticket to Work Program.
* For an individual living with MS and receiving SSDI, work incentives include the substantial gainful activity level, a trial work period, and impairment-related work expenses.
* Individuals receiving SSI can utilize work incentives from the Plan for Achieving Self Support.