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So You're Thinking About Going Back to Work

April 1997

"Life is what happens to you when you're making other plans."
       -- John Lennon

The AIDS crisis is by no means over, and the protease inhibitors and other treatment advances are not working for everybody, but they have already made a dramatic impact on the community of people affected by HIV. We have only now begun to experience the shock waves resulting from this new phase of the epidemic, with improvements in health, lab numbers, and decreases in hospitalizations due to AIDS illnesses. As of now, no one knows whether we may have rounded an important bend in the course of the epidemic.

We now find ourselves standing on the edge of a new frontier, full of hope but having few answers to the questions that really matter. Most fundamentally, no one knows how the currently available drugs, including protease inhibitors, will fare against the virus over the long term. Our situation may be highly ambiguous and our future uncertain, but the current treatment advances have already had a dramatic impact on the public perception of the disease, with direct ramifications for people living with the virus. Whether founded or not, people are using the word "cure." It is left to us to deal with the fallout.

The viatical industry (the companies that buy your life insurance) is in a state of total chaos, profoundly uncertain as to issues of life expectancy. The Social Security Administration has begun to review more carefully applications for HIV-related disability and to implement a specific procedure for review of HIV-related claims every seven years, as it does with its other long-term claims. Some private disability insurers, made delirious by the protease hype, and worried by the implications of long-term payout, have begun an aggressive review of their files in order to determine whether some of their insureds may be able to return to work.

We don't know exactly where we will stand next year, it's true, but for now HIV disease seems to have made the transition in public perception from a terminal to a chronic illness. It has become a different ball game, raising a multitude of new questions and new issues. Where do you now fit in, and what are some of the challenges with which you might be confronted? Is there any way to prepare yourself for them? What are some of the issues you might need to think about? Let's take a look.

Where Do You Stand?

Even a few short years ago, AIDS used to be much simpler. When people became seriously ill with the disease, they rarely got better. When they had reached the point that they were too ill to work and went on disability, they rarely rebounded sufficiently to reenter the workplace. Once they had been found to be disabled by HIV illness by the Social Security Administration or other insurers, there was little reason for the insurers to carefully monitor their files. Usually, the course of the illness led in only one direction, and it was just a matter of time. People living with the disease made decisions accordingly, coming to terms with the situation as best they knew how.

Figure into the picture the recent treatment advances, however, and each of the above assumptions starts to fall apart. Although the news could not be more positive or exciting, it has also created real ambiguity and raised dramatic challenges for those living with the disease. People who have gone on HIV-related disability, especially, are faced with a multitude of disturbing issues. With good reason, people for whom the available combinations are not working fear that the prevailing "AIDS crisis is now over" mentality may lead to a premature cut-off of benefits and force them back to jobs they cannot handle. Others, currently experiencing a boost in their health, anguish over whether they really can do what they used to do, and whether their new energy will last. Such individuals, faced with the intimidating realities of the job market, often wrestle with their honest desire to return to productive work (and its rewards) on the one hand, and their fear that the experience could hurt them on the other.

The situation has indeed become tricky, and no road map is available to guide people through the maze. Each situation is different, and few clear rules apply equally in every case. If you find yourself grappling with the issues of returning to work, creativity, forethought, and common sense will be your best guides and take you further than any sort of legal authority. Take the time to analyze your individual situation, think seriously about your goals, and arm yourself with as much information as possible before you act. Granted, it can be a real challenge to chart out your course on shifting sands, but you have to give it your best shot.

What Are the Pieces of Your Puzzle?

For people currently on disability, the recent treatment advances threaten a major shake-up. Think about it: such people have taken the difficult step of giving up their employment, with all the losses that entails, and have adjusted as best they can to a new world of benefits and alternative health insurance coverage. Depending on their situations, they have come to rely upon some of the following: social security benefits (SSDI), their own assets, supplemental security income (SSI), private disability benefits, food stamps or other means-based programs, COBRA health insurance coverage, Medicare, Medicaid, AIDS drug assistance programs, or a variety of others. In most cases, people have been able to piece together a system (ramshackle and difficult though it may sometimes be) that meets their basic needs. Now, all of a sudden, the unexpected possibility of good health threatens to again turn their worlds upside down.

If that is your situation, you may feel deeply mixed feelings. On the one hand, most people experience a significant loss of income upon leaving the work force and entering the disability "system," and that extra money probably sure looks good. Also, the idea of once again using your talents and actively contributing to society may deeply appeal to you. On the other hand, you know there are no guarantees, either with the job market or your health.

Think carefully before you leap. Even if you are feeling better now, and even if your level of energy has increased, are you really up to the challenges of working in today's marketplace? Are you physically and mentally capable of doing the job you did before, and are you even aware of how the same job might look today? Might the requirements of the job have changed significantly during the time you've been away, or more technical knowledge be required? Are you feeling better because you have been able to enjoy a more flexible schedule, to get some rest, and to avoid the inevitable pressures of any job? Does the very idea of returning to work make you nervous or a little anxious? If so, don't ignore those feelings. Talk them over with a therapist, or trusted friends, before making your decision.

The decision of whether or not to give work another try is indeed a difficult one, fraught with uncertainties. The most troubling possibility, of course, is that your current rebound in good health may not last. What if you take the leap of re-entering the work force, giving up your entitlement to disability benefits, Medicare, or Medicaid, and then relapse into poor health? Will new waiting periods for benefits be imposed, leaving you exposed? What might the other possible consequences be? Is there anything you can do to minimize your risks?

Let's take a look. Even though we don't have all the answers, the news might be better than you think.

Charting Out a Strategy

At least with respect to most components of your disability benefits, an important safety net is built into the system. Think about it from the insurers' perspective: since they obviously have an interest in getting back to work and off the disability rolls, and since they realize that you would be unlikely to even consider taking that leap if you feared a total loss of your benefits, they have in most cases made available incentives to encourage you to take that chance.

Before taking any action, it is essential that you take the time to carefully analyze each of the benefits you are receiving and to understand as best you can how the pieces of your puzzle fit together. If you see a possible return to work on your horizon, try to avoid making assumptions about the effect such a move might have on any of the benefits that are important to you. How do your benefits relate to one another and work together as a whole? How would that balance be affected by a return to work? If you take the time to do a little homework, you may find that good, solid answers are available to such questions. At a time when so many fundamental questions cannot be answered, it is essential that you find answers to every question you can. Arm yourself with all available information and do your best to chart out a strategy.

Generally, two types of benefits are most important to people on disability: sources of income and health insurance coverage. As to the first category, are you receiving SSDI or SSI benefits from social security? Private disability benefits? Do you have personal assets, or any other sources of income? Does your flow of income result from a combination of the above? If you are thinking about returning to work, ask yourself (with respect to each source of income) "Would this benefit be affected if I started working again? What would happen if I again became sick and had to stop again? Would the benefit be lost?" These questions are intimidating, but answers are available. Similarly, take a hard look at the source of your health insurance coverage. Are you covered under a private health insurance policy? Or are you, like many on disability, still covered through COBRA extension coverage as a member of a group through your last employer? If so, how much longer will it last? Have you put your employer on notice that you wish to exercise your rights to 29 months (as a result of disability) instead of the typical 18 months of extension coverage, as required by law? Are you covered through Medicare, or currently in the two year waiting period to qualify? Is Medicaid your insurer? Again, in each case, ask yourself what the specific consequences to you might be of returning to work, and what might happen if you again relapsed into illness in the future.

A Survey of Specific Benefits

Let's take a look at some specific benefits that may be pieces of your disability puzzle. A couple of caveats: this list is not complete, and we here cover only the highlights in order to get you thinking. In each case, more information is available from appropriate sources about the benefits mentioned. The following should be a starting point, not a substitute, for an analysis on the specifics of your situation.

Private Disability Policy. If you are currently disabled and receiving benefits under a private policy, whether obtained by you individually or as a benefit through your last employer, carefully read the policy. Start with the policy's definition of disability. If disability is defined as the inability to do your specific job, a different type of career may not necessarily threaten your coverage. This issue can be tricky; proceed with caution.

In order to encourage a return to work, most policies provide for a period of recurrent disability, or define periods of disability, such that no new "elimination period," or waiting period for benefits, would again be imposed if you had to stop working. Depending on your policy, that might give you six months or a year of leeway. Before you take action, however, make careful note as to the distinction on this point between an individual disability policy and one issued to you as a benefit in group employment. (In the first case, the contract is between you and the insurer, while in the second you are a covered beneficiary under a contract between your employer and the insurer.) If you have an individual policy, you probably have the option of keeping it in place by continuing to pay premiums, even if you go back to work. If the policy is a group one, however, and you return to work at a different job for long enough to lose your disabled status under that policy, you will have severed your connection with your prior employer and the insurer may no longer be bound to insure you. Please exercise special caution on this point.

Also, if you are currently on waiver of premium, meaning that you've been covered long enough that no premiums are now required to keep the policy in force, check out how long you would be able to be back at work and off the policy before you would again have to pay premiums. If your premiums have not yet been waived, do not stop paying them until the insurer has informed you in writing that you may do so. Otherwise, you may be in for trouble.

Read carefully the provisions in your policy dealing with residual disability, or partial disability benefits. Such provisions allow you to continue collecting a partial benefit on your policy if you are able to work, but not at the same level you used to. They typically kick in when you can no longer perform certain tasks important to your job, or when your income drops somewhat (but not completely) as a result of disability. By offering a middle ground between the "all or nothing" of total disability, they are designed to help you keep working if possible, or to foster a return to work according to your current level of ability.

If such an option is open to you under your policy, think seriously about the possible advantages. First, when you cannot be sure at what level you will successfully be able to work, it makes sense to leave yourself some breathing room. Why take the leap of committing yourself 100% to new employment when you may not have to? If you have carefully thought it through and are serious about giving work another try, think about discussing this possibility with your insurer. For obvious reasons, you may find them to be extremely cooperative. They will almost certainly appreciate your willingness to try. If the experiment fails, too, and that failure is appropriately documented, they may be less likely to assert at some future point that you are no longer disabled.

Second, under such provisions, your income will increase because you will continue receiving at least partial benefits even though you are earning an income at work. Finally, if you are covered under a policy through a prior employment group, as mentioned above, the coverage may not lapse after a certain number of months as it might if you fully returned to work and relinquished your ongoing claim to benefits. If that's the case for you, ask yourself whether you really want to take the leap of re-employment without the safety net that is available to you. Optimism is great and important, but let's not forget that we are all feeling our way through the twisted turns of this epidemic with no clear map, and with no guarantees. Proceed with caution.

Along similar lines, check out whether your policy offers occupational therapy or rehabilitation benefits to help pay for the education you might need to return to work. In some cases, insurers eager to get you off their rolls might actually help you out with some cash for an approved plan to get you back to work.

Social Security Disability Benefits ("SSDI"). Some necessary background, in a nutshell. Once you are found disabled by the Social Security Administration ("SSA") and eligible for SSDI, payments begin five full months after the start of your disability. (This is called the waiting period.) After you have been receiving SSDI for 24 months, you automatically qualify for Medicare health insurance coverage. Since the SSA wants to encourage you to return to work, it has built into place various work incentivesdesigned to keep your benefits and Medicare coverage in place for certain periods of time while you give employment a try. (This stuff can get complicated, and is important to understand. For more specific information on how those incentives might work for you, contact your local social security office or visit the SSA's excellent web site at, and search the site using the term trial work period.) Let's start with the most important work incentive.

Trial Work Period. If you are currently receiving SSDI (meaning that you have passed the waiting period), you have the right to work at any job, and earn any amount of money doing so, for a nine month period without fear of losing your benefits. Under SSA rules, you are required to inform them that you have returned to work. If you earn less than $200 in a month, that month will not count as one of the nine. The nine months need not be consecutive, allowing you some important flexibility, and can take place during any ongoing five-year period of benefits. During the nine month period your benefits will not be disturbed.

At the end of the period, the SSA reviews your record and assesses whether or not you are still qualified for benefits under applicable guidelines. They primarily focus on whether or not your earnings have consistently reached a level of substantial gainful activity, basically $500 per month, and not the question of whether or not you are still disabled. This is an important distinction, and one that should provide you with some peace of mind if you are thinking about returning to work. The work incentives, after all, are in place to provide you with a "comfort zone" to experiment with work rather than to strip you of your benefits. Even if your benefits stop after the end of the trial work period, that does not constitute a finding that you are no longer disabled. That is an important distinction, because a series of safety nets remain open to you.

In calculating substantial gainful activity, the SSA allows deduction of a wide variety of disability-related expenses if paid by you and necessary to allow you to work, including not only medical equipment but also prescription drugs and many others. Even if your income has reached that level during the trial work period, and upon review you are found to be no longer eligible for benefits, you will still receive an additional "grace period" of payments for the following three months, guaranteeing you twelve months of benefits even if you do fully return to work.

But what if you become sick again and are forced to once again return to the disability rolls? More good news. First, if you lose your job or your income again drops below the level of substantial gainful activity within five years, no new waiting period for benefits will be imposed. Second, the end of your trial work period, when your SSDI payments have stopped, triggers an extended period of eligibility of 36 months, or three years. If you relapse into disability during that time and your income plummets, you will start receiving full benefits again with no new application, disability determination, or waiting period. (So even though you must file a new application for benefits after three years, there will still be no waiting period if it's been five years or less.) All you need do to restart benefits, if necessary, is call your local social security office during that time and let them know that your illness has again forced you to stop working.

Medicare Coverage. If you are already covered by Medicare (meaning that you have been receiving benefits for two years) at the time your social security payments stop, you will remain covered for 39 months without payment of premiums after you have entered the extended period of eligibility. After that time, if you are still working but remain medically disabled, you can keep Medicare coverage in force indefinitely by paying premiums yourself. If that is your situation, and you meet certain income and asset limitations, financial assistance from your state may be available to help pay your Medicare premiums, and other related "out-of-pocket" expenses (such as deductibles or co-insurance charges.) To find out the rules in your state, contact your state or local welfare office or Medicaid agency. For more general information, contact your local social security office and ask for HCFA publication number 02184, Medicare Savings for Qualified Beneficiaries.

If you are still in the two-year waiting period for Medicare at the time you return to work, you will be given full credit for the months you have received benefits (toward the 24) at any time you again become disabled, so long as the cause of your prior and your current disability is the same. Otherwise, if the new period of disability is caused by a different impairment, that clock will start running anew after five years.

Supplemental Security Income ("SSI"). Background: SSI is a means-based benefit paid through the SSA, meaning that in order to qualify you must not only be disabled, but must also meet strict asset/ income limitations. No waiting period is imposed for SSI, and Medicaid coverage automatically follows these benefits. Again, work incentives have been put in place to encourage people receiving SSI to experiment with trial work periods without fear of losing their benefits or Medicaid coverage.

Here are some of those incentives, in a nutshell:
Continuation of SSI. If you return to work and start earning an income, you will not necessarily lose your SSI benefits. However, the amount of your SSI check will generally go down as the amount you earn increases. (Note: this is different than the trial work period for SSDI, during which the amount of your benefit will not be affected.) In calculating the amount of your benefit, the SSA excludes the first $85 earned by you and one-half of the remaining amount. The remainder of the amount earned will be set off against your SSI benefit. Even if your earnings cause your benefits to stop, you will not lose your Medicaid coverage if you are still disabled.

If you relapse into disability and your income decreases, your benefit will be adjusted back upward. If that happens more than twelve months after your SSI payments have stopped, you may need to file a new application to again be entitled to benefits.

Plan for Achieving Self-Support ("PASS"): If you are able to come up with an individual plan that might allow you to return to work, (whether starting a new business, training yourself for a new job, or any other specific possibility) and the SSA approves that plan, some of your earnings and resources may be set aside for that purpose. In that event, the additional earnings will not be counted by the SSA so as to reduce your SSI benefit. For more information, check with your local social security office.

Note: if appropriate vocational rehabilitation might help you back to work, financial assistance may be available from your state to help you out. Once you are in an approved program, your benefits will not stop until it is completed.

Medicaid Coverage. Even if you earn above the SSI limits, an thus no longer qualify for benefits, you will remain covered by Medicaid as long as you remain disabled, if you cannot afford similar medical care and depend on Medicaid in order to work. Check on the level of income that would be required by your state before a loss of coverage would result.

If you have been off both SSI and Medicaid for twelve months or more, you may need to apply again if you relapse into disability.

COBRA and other Health Insurance Coverage. If you are able to start working again, one of the key benefits of making that move could be good, group health insurance coverage. The Health Insurance Portability and Accountability Act passed in 1996, the most important provisions of which will take effect on July 1, 1997, should make a real positive difference on that front. Under the law, any exclusion periods for pre-existing conditions must be reduced, month for month, by virtually any other health insurance previously in place (including COBRA coverage, Medicare, or Medicaid), so long as there has been no break in coverage of 63 days or more. Also, the availability of individual coverage is guaranteed for people whose COBRA coverage has expired, but who are not yet eligible for Medicare.

For more detailed information on this important legislation, please see Chapter 11 of the author's book HIV Law: A Survival Guide to the Legal System for People Living with HIV (Crown Publishers).

If you have good COBRA coverage and are thinking about returning to work, think seriously about keeping that coverage in place at least temporarily even if you do qualify for new group insurance coverage. That way, you will have coverage to fall back on if you do encounter problems resulting from your pre-existing condition. When HIV is involved, having additional layers of coverage in place definitely will not hurt.


If you take the time to check it out, at least some of the answers about your specific situation will be out there for you. The decision to return to work is an important one, and one likely to cause you some anxiety. Reduce that anxiety by arming yourself with as much information as possible. You may be more in control than you think!

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This article was provided by Paul Hampton Crockett, Esq..
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