Social Security Beneficiaries Returning to Work

The Social Security Administration (SSA) manages two programs that provide cash benefits to persons with disabilities. The two programs are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). For many individuals who are HIV-positive, these programs provide a much-needed source of income at a time when the individual's physical or mental condition makes it very difficult for him or her to work. However, because the monthly benefit amounts are often not high enough to live comfortably, many HIV-positive individuals receiving these benefits are interested in obtaining some sort of employment either to replace or supplement the benefit check. Fortunately, SSA does provide incentives to obtain or return to work, and has recently implemented several new work incentives under the Ticket to Work and Work Incentives Improvement Act of 1999.1

In order to take advantage of these work incentives, a Social Security beneficiary must first determine whether they are receiving SSI, SSDI, or both. It is important to determine this because the two programs have different work incentives and rules concerning employment. The easiest way to make this determination is by looking at the amount of a monthly check and the date upon which it is received. SSI recipients always receive their checks on the first of the month, and, in Illinois, the standard SSI payment for a single person living alone in 2002 is $545(2). However, the amount of an SSI check is dependent on several variables, including, but not limited to, living arrangements, earned income, unearned income and in-kind support. SSDI beneficiaries receive their checks on the third of the month or a later day in the month, depending on their birthdate. The amount of an SSDI check will vary, depending on a person's work history and the amount that the person has contributed under the Federal Insurance Contributions Act (FICA). Dual beneficiaries, persons who receive both an SSI and SSDI check, will receive two separate checks during the month, usually totaling $565 in 20023. Dual beneficiaries can take advantage of the work incentives under both programs.

Below is a brief description of some of the SSA work incentives and employment rules. This description is not exhaustive, and any beneficiary thinking of returning to work should contact the Benefits Planning Assistance and Outreach Project (BPA&O), discussed below. It is important to understand that, in most circumstances, a beneficiary can go back to work and may not lose all of his or her benefits entirely or immediately. In addition, a beneficiary may continue to qualify for some important benefits, like Medicaid or Medicare, for several years even though he or she is working.

Work Rules and Incentives for the SSDI Beneficiary

When an SSDI beneficiary starts working, SSA begins to keep track of the beneficiary's average monthly amount of earnings. Under the SSA rules, when an SSDI recipient returns to work and earns at least $560(4) per month, he or she enters what is referred to as the Trial Work Period (TWP). Each month that a recipient earns at least $560 per month is referred to as a service month. A person is allowed to make any amount of money over $560 for nine service months, which do not have to be consecutive, within a sixty month rolling window. During this time, the individual will still receive SSDI benefits in the full amount and there is no limit on the amount of earnings that a person can make during the TWP. This is a very complicated rule, and a person must keep track of his or her earnings to determine exactly when the Trial Work Period begins and ends. Basically, an SSDI beneficiary who has not earned income while receiving SSDI can return to work and earn any amount of money for nine months and he or she will continue to receive a full SSDI check as long as the disabling condition continues. Once a SSDI beneficiary has accumulated nine months of earnings over the allowed TWP amounts, the TWP ends.

After the TWP ends, a person enters the 36-month Extended Period of Eligibility (EPE). During this period, a beneficiary may or may not receive a SSDI check, depending on their earnings. If, during the EPE, a beneficiary's earnings exceed what SSA calls substantial gainful activity (SGA5), then the individual will receive a SSDI check for that month and the next two consecutive months. This is known as the Grace Period. During the remainder of the EPE after the Grace Period, a beneficiary will not receive a check in any month in which his or her earnings exceed the SGA amount ($780 in 2002). However, in the months in which their earnings are below SGA ($780 in 2002), the individual will receive a full SSDI check. This Extended Period of Eligibility assures that a beneficiary has income for a significant time after he or she returns to work.

After the Extended Period of Eligibility ends, a beneficiary earning over the substantial gainful activity amount ($780 per month in 2002) who has exhausted the Grace Period will not receive benefits even if he or she earns under $780 per month in the future. However, if, within the next five years, the beneficiary can no longer work because of the original disabling condition, that beneficiary can take advantage of the new Expedited Reinstatement of Benefits (EXR). When a former SSDI recipient files under this SSA provision, the former recipient will immediately receive benefits while SSA determines if the person is still disabled. These provisional payments will last for up to six months and if it is determined that the person's disability was not the cause for their reduction or cessation of work, he or she will not have to pay these benefits back, absent fraud.

Under the old SSA rules, when a person completed his or her Trial Work Period, SSA usually performed a medical Continuing Disability Review (CDR). A medical CDR is a review of the disability and determination of whether the beneficiary continues to meet the criteria of an individual with a disability. Many SSDI beneficiaries have been afraid to return to work for fear that if they were successful, they would lose eligibility for benefits when this CDR occurred. Beginning in 2002, there will be no more medical CDR's performed because a SSDI beneficiary is working if that beneficiary has received benefits for at least 24 months. A beneficiary will still be subjected to their regularly scheduled medical reviews, which could occur while he or she is working, and a work review. However, working alone will not trigger a "second look" at the disability.

Most SSDI beneficiaries are eligible for and receive Medicare. The fear of losing health insurance is usually the main reason why beneficiaries do not consider returning to work. However, under SSA rules, almost all SSDI beneficiaries continue to qualify for Medicare for 93 months after their Trial Work Period ends. In addition, after this time, if a person remains disabled, he or she is given the opportunity to buy his or her Medicare coverage for a reasonable price.

Work Rules and Incentives for the SSI Beneficiary

Because SSI is considered to be a means-based welfare program, the rules regarding earned income are different than the rules for SSDI beneficiaries. If a person receives SSI and returns to work, the check does not necessarily stop immediately. Rather, SSA allows for certain deductions from countable income and most SSI beneficiaries who begin earning income do receive a reduced check.

The SSI work formula works as follows. First, SSA disregards the first $65 of earned income. Second, one-half of the remaining earned income is excluded. In addition, there is a general $20 income exclusion that is applied first to unearned income, and then to earned income. These rules allow an SSI recipient to exclude over half of his or her income when determining the deduction from the SSI check.

Simply put, after earning $65, a beneficiary will lose $1.00 of benefits for every $2.00 earned.

An example will make these rules clearer. Jim is an SSI recipient and receives a SSI check in the amount of $545. He gets a job earning $805 per month. SSA will compute his SSI payment amount as follows. First, they will deduct the first $65 of his income, leaving $740. Second, another $20 will be deducted under the general income exclusion, leaving $720. SSA then divides the $720 in half, leaving a countable income of $360. The countable income of $360 is then deducted from his SSI amount of $545. Jim will receive an SSI check of $185 to supplement his earned income of $805. This will give him a total monthly income of $990.

Like SSDI beneficiaries, SSI beneficiaries are often afraid to return to work because they do not want to lose their health insurance. Most SSI beneficiaries rely on the Medicaid program for their health benefits. Fortunately, many SSI beneficiaries can return to work and still receive Medicaid without a spenddown.6 Under a rule called 1619(b), an Illinois SSI beneficiary will continue to receive Medicaid without a spenddown until he or she earns a countable income of $25,302.7 Under this rule, a person could no longer be receiving an SSI check due to income but will still qualify for Medicaid. Although there have been some problems in implementing this rule in Illinois in the past, the Illinois Department of Human Service is well aware of this rule now and should not cut a person off of Medicaid simply because they return to work.

SSI recipients can also request reinstatement of their benefits under the provision for Expedited Reinstatement of Benefits (EXR). If an SSI recipient's benefits are terminated because of work, that former recipient can reapply for benefits within 60 months of his or her last check without filling out a new application if the former recipient can no longer work due to the original disability. Under this provision, the SSI beneficiary will receive up to six months of provisional benefits while the reinstatement application is pending. If a determination is made that the person's reduction or cessation of work was not caused by the original disability, the individual will not have to pay these benefits back, absent fraud.

The New Ticket to Work Program

In 1999, the Ticket to Work and Work Incentives Improvement Act of 1999 became law. In addition to the many new work incentives outlined above, this legislation creates a new vocational rehabilitation system for beneficiaries of Social Security. This new system will begin in thirteen states in 2002, and be implemented in all states over the next three years. Illinois is one of the first thirteen states to implement the new program.

Beginning in February of 2002, most Social Security beneficiaries in the state of Illinois will receive "Tickets" in the mail. These Tickets can be used by Social Security beneficiaries to choose a pre-approved agency, called an Employment Network, from which to obtain vocational rehabilitation services and/or other employment support services. These services could include, but are not limited to, case management, work incentives planning, supported employment, career planning, career plan development, vocational assessment, job training, placement services, and follow-up services. Currently, there are 35 Employment Networks in Illinois.

It is important to understand that this new program is voluntary. A beneficiary can choose whether or not to use the Ticket. This is not a program to force beneficiaries to go to work. In addition, the Employment Networks can accept or reject anyone asking for their services with a Ticket.8 The new Employment Networks may be listed in the letter sent with the Ticket or can be found at A beneficiary is well advised to shop around to find the Employment Network that is best equipped to meet their individual needs and is willing to take their Ticket.

Support Assistance for SSA Recipients Wanting to Return to Work

Understanding the work rules and incentives of SSA is very difficult. Fortunately, SSA has funded a new nationwide project called Benefits Planning Assistance and Outreach (BPA&O). The BPA&O staff is available to assist Social Security beneficiaries in understanding what will happen to their benefits if they work. A trained Benefits Specialist will sit down with the beneficiary and gather individual information. The Specialist will then do an analysis for the beneficiary to assist him or her in understanding what will happen to each of the beneficiary's government benefits if he or she begins working. It is so important that beneficiaries utilize this service before returning to work. As outlined above, the work incentives are confusing and difficult to understand. By working with a trained Benefits Specialist, a beneficiary can understand exactly how income will affect each of his or her state and federal benefits. Armed with this information, a Social Security beneficiary can make an educated and informed decision about and/or plan for working.

The services of this program are free. In Illinois, three different agencies run these projects, the Mayor's Office for People with Disabilities (1-312-746-5743), the Illinois Department of Human Services-Office of Mental Health (1-866-390-6771) and the Illinois Department of Human Services-Office of Rehabilitation Services (1-800-807-6962). The Mayor's Office for People with Disabilities serves the residents of Chicago, and the other two agencies serve other parts of the State. Benefits planners outside of Illinois are listed at or with the local Social Security office.

Once a Social Security beneficiary decides to return to work, he or she may need assistance in accessing needed services and supports or requesting a reasonable accommodation for his or her disability. In addition, the beneficiary may encounter other legal barriers to returning to work. Under the Ticket to Work Act, a new project has been developed to advocate on behalf of beneficiaries with their return to work issues. In Illinois, this project is run by Equip for Equality, Inc. and is called Protection and Advocacy for Beneficiaries of Social Security (PABSS).

In Illinois, as in most other states, the PABSS Project has two major components. First, the project will serve as advocates for Social Security beneficiaries with return to work issues. This will include addressing any legal barriers that are preventing the individual from beginning or maintaining employment and assisting beneficiaries with difficulties arising from the use of their tickets or in receiving proper and appropriate services from the Employment Networks. Second, the project is available to conduct training seminars on the employment rights of Social Security beneficiaries. These seminars are open to persons with disabilities, their family members, service providers and agencies, or employers. The training provides an overview of the Social Security work rules and incentives and the Americans with Disabilities Act of 1990.

The services of this project are free as well. To contact a PABSS advocate in Illinois, call 1-800-537-2632. All PABSS Projects around the country are listed at or can be reached by contacting the local Social Security office.

John Coburn is the PABSS Project Manager and attorney at Equip for Equality, Inc. in Illinois.


  1. It is important to note that many of the incentives and rules explained in this article pertain to non-blind Social Security beneficiaries. For individuals receiving Social Security because of blindness, the rules and incentives differ. Those individuals should consult with their local Benefits Planning Assistance and Outreach Project.

  2. Some states provide a supplement to the standard amount of $545. SSI beneficiaries in those states would receive more than $545 per month.

  3. Again, this is the standard amount, which is given to beneficiaries in Illinois. Some states provide a supplement.

  4. $560 per month is the amount for the year 2002. The amount was $530 in 2001 and $200 prior to 2001.

  5. The substantial gainful activity (SGA) amount for 2002 is $780. The amount will change yearly, based upon the national average wage.

  6. Spenddown is the term used for the monthly amount of medical expenses, billed or paid, that a person or family must accumulate before qualifying for Medicaid during that month.

  7. This amount varies from state to state.

  8. The only exception to this rule is that state vocational agencies that become Employment Networks, including the Illinois Office of Rehabilitation Services, must accept or reject persons seeking services under its previously established rules.

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