RETURNING TO WORK AND KEEPING MEDICARE AND MEDICAID

(Note: Be sure to check www.ssa.gov/work for additional return-to-work and Ticket-to-Work information.)

You’re on Social Security – Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), or both – but you find that your benefits aren’t enough to live on. The average monthly SSDI check is about $890 and SSI pays up to $579 in 2005. But most large industrial states supplement the federal SSI level: for example, in 2005 SSI, together with the State Supplementary Payment (SSP), pays up to about $750 in California and up to about $660 in New York.

You’ve got a problem. The Social Security law bases eligibility for disability benefits not on clinical condition alone – being “disabled” in an ordinary, medical sense of the word – but also on being unable to engage in any “substantial gainful activity” (SGA). This means that working can, and often does, cost you eligibility for some but not always all benefits. Generally, in 2005 monthly earnings of over $830 trigger Social Security to declare the work to be disqualifying SGA. In situations where someone is working, or trying to work, over a period of several months, though, earnings as low as $590 monthly in 2005 can cause Social Security to count such a month towards what is called a “Trial Working Period” month—and you are only allowed 9 of them.

As always, there are exceptions with complex government programs. Of course, you could arrange to work for cash under the table, and not tell anyone; or, like illegal aliens, you could work under a friend’s Social Security number and name, or invent a name and manufacture or buy a fake Social Security card to use. Thousands do it and get away with it, but it is illegal. Not only would you risk cancellation of your benefits, you’d be subject to prosecution for a federal crime in the event that you were caught.

If you’re on SSDI, and not SSI, you could arrange to work above-board with an employer who is familiar with you in what is called “subsidized employment” by Social Security. This term refers to situations in which an employee really doesn’t earn his or her own wage and really isn’t productive. It’s commonly used, for example, if a severely mentally retarded person is put to work for “busy work” purposes. Such “work” doesn’t really count as SGA and therefore it doesn’t affect eligibility for SSDI. It does, however, affect SSI, because SSI is a welfare program, and any money you get, whether from “subsidized employment” or anything else, can reduce or eliminate your SSI check.

But “subsidized employment” is also used by Social Security for situations in which an employer “for old times’ sake” or for “disguised charity” reasons keeps or puts a long time or favored employee or friend on the job payroll even if he or she can’t really “produce.” It happens all the time when loyal employees gradually sicken as they become disabled. Social Security is quite used to this, and fits it easily into its “subsidized employment” SGA exemption. It’s important to remember that the exemption for the SGA rule doesn’t really matter much for SSI, because SSI counts all earnings ---including “subsidized” wages---toward its financial eligibility limit. To determine whether you are poor enough to qualify, SSI counts all earnings except for $85 and one-half of the rest before comparing your resulting countable income to the 2005 SSI level of $579 (and any state supplement).

SSDI vs. SSI, Medicare vs. Medicaid: Which is Which? What’s the Difference?

The Social Security Administration (SSA) runs two separate income programs for disabled people – Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). SSA also determines eligibility for the federal Medicare program for disabled and aged Social Security recipients, and tells states and localities who is on SSI so that they can be given Medicaid cards. States and localities determine Medicaid eligibility for everyone who is not on SSI, and run the rest of their Medicaid programs with federal financial help.

SSDI: Social Security Disability Insurance is an insurance program that sends out monthly checks to disabled workers who have paid Social Security taxes (called “FICA” on your paycheck stubs). You must have worked for at least 5 of the past 10 years before you apply to be “currently insured”, or covered, but the minimum time is less if you’re under age 31 when you become disabled. The amount you get depends upon how much you have paid in taxes and for how long, since SSDI is an insurance – not a welfare – program. In general, the higher your earnings have been and the longer you have earned them, the higher your SSDI check will be. Benefit amounts vary from a low of about $200 monthly to a high of about $1,900; the average SSDI check in 2005 is about $890 but this average does reflect low wages paid in the South, in rural areas, and in small towns. Big city workers who’ve enjoyed big city paychecks do better. If you have minor children, whether or not you live with them, they can also get smaller “auxiliary” checks to support them when you become disabled, and so can their other parent if he or she stays home to take care of them while they’re under age 16. The children’s and other parent’s checks will continue, and even increase, after your death, when the checks are renamed “survivors’ benefits.” SSDI checks start at the end of the fifth month after the “date of onset,” the day you became “disabled” under the Social Security rules by meeting the medical rules as well as not engaging in substantial gainful activity (“SGA”; see main text above).

Medicare – the very same health plan that retired people over 65 enjoy – can be obtained after receiving SSDI for 24 months. Medicare has two parts: Part A, which you pay for through your payroll taxes, and which covers overnight hospital bills, hospices, home health care and very limited, partial nursing home care; and Part B, three-fourths of which is paid for by the general federal income tax, and one-fourth ($78.20 a month in 2005, deducted from your SSDI check) by you. It pays for doctor, ambulance, emergency room, clinic and most other outpatient care (except drugs and nutritional products). Medicare has an inpatient hospital Part A deductible of $912 in 2005 for most admissions, and a $110 yearly Part B deductible. It then pays 80% (but only 50% for psychiatrist care) of its “allowable” fee schedule. Why doesn’t Congress abolish the 2-year waiting period for disabled people to get Medicare? The answer is that it would cost too much. Many disabled people die (very expensively, of course) during the wait for Medicare. If Medicare had to cover them too, it would go bankrupt, or new taxes would be needed (and even without such added expenses, Medicare is facing bankruptcy anyway).

SSI: Supplemental Security Income is a welfare program for disabled people who meet the Social Security medical and SGA disability rules and whose income and assets are below the eligibility levels. SSI allows assets of $2,000 liquid; a separate bank account of up to $1,500 for “burial”; a vehicle of any value, if used to go to medical care; household furnishings; certain self-employment business equity and equipment; and a lived-in home of any value. The SSI income level in 2005 is $579 per month (but it’s higher in most wealthy industrial states, which supplement this amount). All gross income counts against this level: SSDI, earnings, pensions, gifts, contributions, bank interest, dividends, veterans’ benefits, etc. If your SSDI check is below the SSI level, you can get SSI as well as SSDI. Before comparing gross income to this level, SSI disregards (i.e., doesn’t count) $20 per month of any income, out-of-pocket Impairment Related Working Expenses (IRWEs: medical costs you pay to enable you to work) and $65 and half the rest of any earnings. If the resulting countable income is above the SSI income level (again, $579 in most---but not all—states in 2005), you’re not eligible. If it’s computed to be less, you get an SSI check for the difference between your countable income and the SSI level – and, as a “fringe” benefit in most but not all states, a Medicaid card.

Medicaid is run by the state and local governments. It completely covers hospitalization, clinic visits, emergency room visits, doctors’ visits, hospices, home health care, nursing home stays, ambulance and outpatient prescription drugs. Medicaid has very small co-payments for prescriptions, doctor visits and some other care. While all hospitals and almost all drug stores accept Medicaid, most doctors don’t, and many home health agencies, nursing homes, and hospices are also reluctant to accept Medicaid. People on SSI are eligible for Medicaid, and in most but not all of the states in the nation, SSI sends lists of recipients to the local government, which then automatically sends Medicaid cards out to them. But in some states, you must always apply separately for Medicaid at the welfare office, even if you’re applying for SSI or are already on it.#^{symbol

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You Can (And, If you Can, Should) Be on Both Medicare and Medicaid. It’s possible – indeed, sometimes it’s absolutely necessary – to be on both Medicare and Medicaid. In that case, Medicare first pays medical bills up to whatever its rules allow, then Medicaid pays the rest. Always get Medicaid, if you can, to supplement Medicare, because with it, you’ll have a way to pay deductibles and co-payments that you would otherwise face without it. Moreover, Medicaid pays for some things Medicare doesn’t cover at all – most notably, drugs. Conversely, always get and keep Medicare (including Part B) even if you are already on Medicaid. Medicare pays doctors and hospitals more than Medicaid does, and therefore will make them more likely to accept you as a patient and devote adequate time to your case. Don’t be afraid of the Part B monthly premium, either. Once you’re on Medicaid, it will start paying the premium for you, and your SSDI check will go up by $78.20.

SSDI has an even better exemption from SGA-related rules if you want to try working. It’s called the “trial work period” (TWP). This provision lets you work above the SGA level for up to 9 months. Any month in which gross earnings, without any deductions, are over $590 counts as a TWP in 2005, as do any months with over 40 hours in self employment. You still get your full SSDI check. The 9 months don’t need to be in a row.

It’s a good idea to tell the Social Security office that you’re about to begin a trial work period, because otherwise the clerks there will discover your work through computerized quarterly employment tax records provided by the Internal Revenue Service. And due to the heavy workload in SSA offices, they’ll simply divide reported quarterly earnings by three and then compare those gross earnings to the 2005 monthly $590 TWP and $830 SGA levels to compute one’s TWP (and what are called “EPE” months where you might also get an SSDI check; see below).

But--because of variations in earnings due to time off, overtime, the ups and downs of hours worked and even the varying days and months on which pay periods end and paychecks are issued-- it’s often best to avoid this by submitting actual pay stubs. They more accurately record month-by-month actual earnings than do the IRS quarterly earnings totals--- which SSA will use if you don’t submit pay stubs. (A moment’s reflection will show that the month-by-month method could be to your advantage in many cases and allow you to avoid the using up of a TWP month—thus preserving it for future use. This is important because every TWP month kept from being used is a month during which you can collect your full SSDI check and earn as much as you can too.)

In fact, totaling your earnings month-by-month is what is called for in federal regulation. (20CFR404.1592(b) says that for SSDI purposes wages are counted when actually earned—and thus not necessarily in the same month in which the pay check is issued). Hence, your careful accounting of earnings monthly when actually earned –as opposed to when the paycheck comes—can often be to your advantage in computing TWP months. This can avoid the using up of months that would be counted by adding up earnings through the easier “quarterly-totaling-and-divide-by-three” and “when the paycheck comes” methods which the overworked SSA clerks will employ if you don’t speak up.

During the first 9 months at work, gross earnings over $5980 in 2005 (or self-employment over 40 hours) monthly cause one of the 9 Trial Work Period (TWP) months to be used up. (But do note that each “used” Trial Work Period (TWP) month is restored 60 months after it’s used.)

In addition, earnings above the $590 (in 2005) that would ordinarily “use up” TWP months or prevent the issuance of SSDI checks during EPE months —if they occur during an Unsuccessful Work Attempt (UWA) that lasted less than 6 months and ended because of reasons related to the disability (i.e., health problems or no-longer-available special accommodations from the employer for the disabled person)—are disregarded for SGA and other SSDI computation purposes. This means that these months should not, after all, be counted as TWP months—and can be “restored” right away if the UWA lasted less than 6 months! And-- even when adjusted monthly earnings are over the 2005 $830 SGA level during the EPE (in months after the TWP) , which would ordinarily prevent issuance of an SSDI check—earnings during a UWA shouldn’t have to be counted as genuine SGA and therefore shouldn’t, after all, prevent check issuance! [There may be some resistance to this argument from SSA representatives on this issue, though. Refer them to the following policy documents: 20CFR404.1574(a)(1), 20CFR416.974(a)(1), POMS DI 11010.210 and SSR 84-25.]

So, during the TWP, one can earn even over the 2005 $590 or $830 levels and still get one’s full SSDI check. And then, if one is still working, one gets 3 months of “Grace Period” checks. Then they’re supposed to stop.

How Deducting Impairment Related Work Expenses (IRWEs) and Employment Subsidies From Gross Earnings Can Trigger Otherwise Unpayable, Full SSDI Checks During the 36 Month Extended Period of Eligibility (EPE) After the TWP

The 3 “Grace Period” months---together with the next 33 months--- are totaled together as the 36-month “Extended Period of Eligibility” (EPE). During this time span, one can return quickly to the SSDI rolls for any month in which one’s adjusted gross earnings fall below the 2005 $830 SGA level—without having to prove one’s disability all over again! EPE months are all in a row—off or on SSDI.

In seeing whether you’re earning an adjusted gross of over the 2005 $830 monthly SGA level, Social Security deducts “impairment related work expenses” (IRWEs): actual out-of-pocket medical care costs (including transportation to medical care and even unusual costs of transportation to work if certified in writing by your doctor as medically necessary) which you yourself pay and which aren’t covered by Medicare, Medicaid, private health insurance, ADAP and similar health programs.

In addition, you get to deduct expenditures that “subsidize employment”: this can include not just the “extra pay” you collected and “really weren’t worth” but which your employer paid you anyway as a kind of private “disguised charity” (which he notes in writing) It can also include other costs your employer bears for having you there (e.g., the salary costs of the added supervision, substitute, make-up work or other costs which your condition imposes, also noted in writing); the “job-coaching” and personal counseling costs (proportionalized salary and overhead, documented in writing) of public or private agencies and programs which provide this to you in order to help you work; mental health care costs paid by Medicare, Medicaid, Ryan White or other public or private health insurance programs which provide you with counseling that enables you to mentally prepare for, and cope with, working (shown by bills and doctors’ notes); and, in general, any other work-return support costs met by you yourself, loved ones or any other organization, person or entity (notes here too).

Again, this can include costs of government and non-profit agencies and even private persons, as well as your employer, in helping you cope with , train for and meet health challenges related to your return to work with your medical condition.

A person returning to work-- if he’s ingenious, but truthful!—can creatively think of, get documentation for and total up many previously-not-considered IRWEs and “subsidized employment” amounts. (Social Security will demand—and you’ll have to assemble—notes, letters or other documents proving these IRWEs and “subsidized employment” expenses, of course.) By then deducting them from gross monthly earnings, someone could reduce his adjusted gross earnings below the 2005 $830 SGA level.

Doing this will bring you a full SSDI check—plus whatever your earnings are—in any EPE month in which your IRWEs and employment subsidies bring your adjusted gross earnings below the 2005 $830 SGA level. Of course, one must take the initiative in turning in documentation for all this as soon as possible—and insist upon it being figured in to SSA’s SGA, TWP and EPE calculations for your case. (Great tools for doing this are Michael Walling’s Manage Your SSDI Benefits and Income and Manage Your SSI Benefits and Income; see the Resources section.)

At the end of the 36 month EPE one’s eligibility to return to SSDI without a full-dress re-application is terminated but only if one is then working above the SGA level. If one isn’t, SSDI checks can continue----but will be ended once any single month’s earnings rise above the SGA level. (But eligibility for Medicare continues until and unless one is affirmatively found “no longer disabled” by Social Security.)

Those who still feel at risk for relapse, even after being successfully back at work over the SGA level for 45 months, should ask SSA about procedures for filing a renewed application if that occurs. (In addition, see the above discussion of Unsuccessful Work Attempts (UWAs), which may be useful in the counting of work months so as to prevent or delay a case termination and closure—and thus the necessity of a whole new application.) And the Ticket to Work and Work Incentives Improvements Act of 1999 goes further: Its “expedited reinstatement”, or “EXR”, provision allows those who’ve received SSDI for at least 2 years to return to SSDI without a full-dress re-application or medical review if they’ve been off SSDI because of work resumption for less than 5 years. Call or visit your local SSA office and ask the SSDI work incentives specialist about this.

While you are in the Trial Work Period and then the Grace Period, your Medicare will continue if you’ve already gone through the two-year waiting period. In fact, if you keep on working you’ll remain eligible for Medicare virtually “automatically” for the full “Extended Period of Eligibility (EPE)” of three more years after the TWP (although you’ll need to arrange to pay the Medicare Part B premium, $78.20 per month in 2005, since you’ll no longer be getting an SSDI check to have it automatically deducted from). Months in the TWP, the Grace Period, and the EPE can even be counted toward the two-year Medicare waiting period if you haven’t yet qualified for Medicare at the time you start working.

Keeping Medicare Even After You’re Working, And Getting Help To Pay For It

During the 9-month TWP and then the 3-month Grace Period, Medicare Part A continues “free,” and the $78.20 premium for Part B in 2005 is deducted automatically out of your SSDI check. But during the next stage – the remaining 33 months of the EPE – you’re still entitled to stay on both Part A and Part B, but there’s usually no longer an SSDI check from which to deduct the Part B premium. This means you’ll need to arrange to pay it yourself at the Social Security office---and then send your 2005 $78.20 Part B premium to the Medicare Premium Collection Center, Post Office Box 371384M, Pittsburgh, PA 15251, along with your Medicare number, or have it deducted from your bank account by SSA. (The Social Security office will supposedly send you quarterly bills for your Medicare Part B premium once the SSDI check stops—but don’t hold your breath! Take the initiative yourself by specifically asking them to have your Medicare Part B continued and to bill you.)

And even after 99 months back at work, you can still stay on Medicare Part A also, but only if you start paying a premium for it too: $206 per month in 2005, unless you paid less than 7.5 years of FICA (“Social Security”) payroll taxes over your whole working life; if you paid them for less time, the premium is a whopping $375 in 2005. (In this case, Social Security is even less likely to inform you of the Medicare extension right than with Part B. Visit the SSA office and complete an “Application for Hospital Insurance (Part A)” to be sure that that your Part A stays in force!) Part A premium payments can be mailed to the Medicare Premium Collection Center, Post Office Box 371384M, Pittsburgh, PA 15251, along with your Medicare number---or you can arrange to have them deducted from your bank account by SSA.

What if you can’t afford those premiums to keep Medicare Parts A and B? You can get the welfare office to pay your Part B premium through its Specified Low Income Medicare Beneficiary (SLIMB) and Qualified Individual (QI) programs if your gross monthly earnings are under $2,240 in 2005. And, with earnings under $1,681 in 2005, the Qualified Medicare Beneficiary (QMB) program, also run by the welfare office, will not only pay both Part B Medicare premiums for you, it will also pay the Part A premiums (when they come due too) and all your Medicare deductibles and co-payments. If you can’t afford the Part A premium, once you begin being charged for that too after a total of 99 months back at work, the welfare office’s Qualified Disabled Working Individual (QDWI) program will pay for it if your gross monthly income is below $3,277 in 2005. (Before comparing your countable income to these eligibility levels, you should insist the eligibility worker first deduct your Impairment Related Work Expenses (IRWEs): actual, out-of-pocket medical costs you yourself pay---such as cash medical purchases, deductibles and copayments, transportation to medical care and over-the-counter drugs and first-aid items--- which you can document. Income levels for families of more than one are higher; these are 2005 levels, which are based on national poverty levels to be updated late each February at www.dhhs.gov on the “Assistant Secretary for Planning and Evaluation” pages.)

The SLIMB, QI, QMB and QWDI income levels are proportionally higher, of course, for families of more than one and higher in Alaska and Hawaii than in mainland states. Early each year, the Medicare Part A and Part B premiums, the Medicare Part A hospital admission deductible ($912 in 2005) and the QI, SLIMB, QMB and QWDI income levels are raised – as are SSDI and SSI payments – to take account of the cost of living increases. (Each coming year’s SSDI, SSI and Medicare increase figures are announced in late November at www.SSA.gov ; the yearly poverty levels, on which QMB, SLMB, QI and QWDI levels are based, are announced in late February at www.dhhs.gov .) Welfare office workers have not been well-trained in the QMB, SLIMB, QI and QWDI rules. If you encounter problems, ask a supervisor to contact the state’s chief Medicaid eligibility staff in the state capitol for guidance.

Administrative Delays & Ignorance of the Programs at welfare offices and state Medicaid agencies delays the starts of state Medicare buy-ins (see “The Buy In Programs” in Clearinghouse Review [Sep//Oct. ‘97]). Delays often occur because some states (CA, CO, IL, KS, KY, LA, MO, NE, NJ, NM, NY, OR, SC, TX, and VA) do not have Part A (as well as Part B) buy-in contracts with HCFA. Where a Part A buy-in is necessary (e.g., for someone completing 99 months back at work whose “free” Part A is expiring or someone over age 65 with too few covered working quarters), this can delay a state’s buy-in for both Parts for over one year in some cases. If you live in one of these states and are nearing the end of your “free” Part A coverage after returning to work----and wish to retain it by paying the premium yourself (if you can afford it) or by having the welfare office’s QWDI program do so for you (if you can’t afford it), be sure to visit both the Social Security and the welfare office early for processing.

Eligibility for Medicare can continue for a lifetime, no matter how much you earn or for how long you’ve returned to work, so long as you have the condition which originally qualified you for SSDI.

Should you be offered employer-sponsored health insurance, do take it by all means ---but you can and should also continue your Medicare. Having both plans together will reduce or eliminate your deductibles and co-payments, and reduce your overall medical bills to the more economical Medicare rate schedule rather than the higher rate schedule used by private insurance. This will reduce whatever remaining portion of the bills you are finally left to pay yourself.

In addition, Medicare pays for many things not covered at all—or only poorly covered-- by private employers’ plans:

* essentially unlimited hospice care, including at-home hospice care and related drugs

* influenza, pneumonia and hepatitis vaccinations and many diabetic, screening and preventive care services

And while you’re always at risk of losing a job and its health insurance coverage, if you keep Medicare in force, it will cover you for as long as you’re disabled – job or no job.

Getting and Keeping a New Employer’s Health Insurance In Case Bad Health or Layoff Ends Your Work Attempt: It’s “COBRA Time” All Over Again!

When you go back to work, join the new employer’s health plan as soon as you can. Do this even if you’re already on Medicare (see the above paragraphs for the reason) or Medicaid (you’ll need the employer plan to be in force in case you later lose Medicaid eligibility, and to see those doctors who’ll accept the private health plan but not Medicaid).

If the employer plan requires you, the employee, to pay part of premium to enroll in it—and you are also eligible for Medicaid—apply at the Medicaid office to have Medicaid pay the premium for you. (Almost all state Medicaid plans pay private health insurance premiums for their Medicaid eligibles.) If you’re not eligible for Medicaid, but are HIV-positive and need help in paying the premium, almost all states’ Ryan White programs will pay it for you. (Ask your HIV services caseworker or call your state’s AIDS Drug Assistance Program contact number.)

If you should leave your new job because of poor health, or any other non-disciplinary reason, you can and should elect to keep its health insurance in force through COBRA for the full 29 months allowed to disabled persons. (Yes indeed! You do have the right to keep health insurance in force under COBRA, just like you did as you first left employment and were on COBRA for the 29 months it took for Medicare to start when you went on SSDI to begin with.)

Be aware that the COBRA rules (which your employer and its health insurer are familiar with) do say that COBRA health insurance rights are ended by becoming enrolled in Medicare. But they do not prevent new COBRA rights for those already on Medicare who then later leave employment. Therefore, you’re entitled to another 29 months on the last employer’s health plan through COBRA all over again! (If your employer or its health insurer object, refer them to the following court cases: John Hancock Mutual Life Insurance Company v. King, 500 N.W.2d 619 (S.D. 1993) and Geissal v. Moore Medical Corporation 118 S. Ct. 1869 (1998). Also refer them to the latest federal IRS regulations on COBRA, 64 Federal Register 5160, 5168, which explicitly grant those already on Medicare a new COBRA right when they leave a new employer.

(Remember that, as with any COBRA situation, you will have to provide the employer or its health insurer with written proof that you are considered disabled by the Social Security Administration as of the date of your leaving employment in order to get the “extra” 11 disability months under COBRA; that you’ll have to pay your premiums on time; and that you’ll have to arrange for Medicaid [if you’re eligible for it] or Ryan White [if you’re HIV-positive and not on Medicaid] to pay the COBRA premiums if you can’t afford them.)

While Supplemental Security Income (SSI) does not have a trial work period the way Social Security Disability Insurance (SSDI) does, SSI does use the impairment-related work expenses (IRWEs) –but not the subsidized employment—income deductions which SSDI uses. But there’s an important difference. Whether you’re working or not, you must always be poor enough to be on SSI. This means that even if the subsidized employment and IRWE loopholes allowed you to work and avoid losing your status as disabled under SSDI because of the SGA rule, your earned income from any kind of employment, if it is high enough, could make you “too rich” for SSI.

Let’s say you arranged subsidized employment and developed written testimonials to Social Security about how the job wasn’t really productive and was only “disguised charity.” This, indeed, would exempt you from the $830 SGA earning limit for 2005. But your gross “earnings” would still be deducted from the SSI level ($579 in most but not all states in 2005) after two disregards: any impairment-related expenses (IRWEs, which you may have already deducted from your gross earnings to evade the SGA rule under SSDI and which you can now use again in the separate computation of how poor you are); and $85 and half the rest of those wages. (SSI also has other, less-widely-used disregards.) Loss of SSI might not be so bad if you’re making good money, but loss of the Medicaid you get from being on SSI would be disastrous.

This roadblock to work for disabled SSI recipients was dealt with by Congress years ago when it passed Section 1619 of the Social Security Act. This says that if you’re already on SSI, and then you go to work in spite of your medical condition, and SSI and the Medicaid you get from being on it provide you the help you need to work, then the SGA rule will be waived. You must always get advance permission from Social Security to do this. It applies only to SSI – not to SSDI.

The regular SSI income-counting rules keep being used, though. This means that after any impairment-related work expenses and the $85 and half the rest of earned income is disregarded, your resulting countable work income would still be compared to the SSI income level ($579 in most but not all states in 2005). And, if that countable income were high enough, you’d still lose the actual SSI check (which, with earnings this high, you wouldn’t need that much anyway) but Social Security would pretend you were still on SSI so that you’d continue to get a Medicaid card.

Since Medicaid is one of the most valuable health coverages you can get with an expensive illness like HIV, Section 1619 is a tremendous benefit, unfortunately little-known and little-used, for those who start out as SSI recipients to support themselves better than SSI can do, yet stay on Medicaid. Again, you must start out on SSI and Medicaid under the regular rules, and only then use Section 1619. Section 1619 won’t preserve SSDI benefits, though, if your SSDI is so low that you’re on both SSI and SSDI. You’ll lose your SSDI (after the 9 month Trial Work Period and the 3-month Grace Period) but the Medicaid that comes from being on SSI will continue. Always get advance permission from Social Security before trying to use this procedure. In those states where Medicaid doesn’t come automatically from being on SSI, you’ll need to bring SSA paperwork verifying your 1619 status to the welfare office too.

Nevertheless, Section 1619 won’t enable you to earn outrageous sums and yet stay on Medicaid. The law says that once your gross earnings are high enough for you to pay your own SSI and Medicaid costs yourself, eligibility stops. In mid-2005, those levels ranged from about $16,000 annually to over $30,000. For your state’s current limit, see below. If your earnings exceed these levels, you’re presumed to be no longer eligible for Section 1619, unless you can show that your own actual medical and related expenses are higher. In that case, the higher, individually-computed level would become the Section 1619 limit for you (see below). .

For SSI eligibility purposes, Social Security’s Plan for Achieving Self Support (PASS) allows for not counting income and assets which are used by a recipient in a pre-approved, written plan for achieving self-support. The SGA rules of the SSDI and SSI programs are not waived by having an approved PASS – although someone with a PASS could have then waived under other SSDI/SSI SGA exemption provisions (see above). In essence, having a PASS allows you to get a designated part of your income or assets disregarded in determining whether you’re eligible for, and how much you get from, SSI.

For example, let’s say that in 2005 you already received $700 monthly from SSDI, plus another $300 from an employer disability pension. That would be too much for both SSI and Medicaid in most states. If you wrote up a PASS, had it countersigned by a staffer at any public or private social service agency or disability advocacy group, and submitted it to Social Security, any income or assets you designate would need to be disregarded for SSI purposes.

Let’s say your plan called for saving $1,000 out of your $3,000 savings account, plus $600 a month out of your $700 SSDI check toward the $27,000 purchase price of a large professional-size van you need to set up your own private on-call taxi service for the handicapped. This could be done to save for any job or education goals you can reach within four years. The $1,000 savings you set aside toward the purchase price would no longer make you “too rich” under the $2,000 SSI asset limit rule. Similarly, the $600 you saved monthly out of your SSDI and pension income would reduce your “countable” income, for SSI purposes, to $400 ($300 pension + the remaining $100 of SSDI). Since you’re allowed up to $2,000 in ordinary savings, and, in 2005, up to $579 (in most but not all states) in countable income for SSI, you would qualify! You’d get a small SSI check monthly ($179 in this case) , plus a Medicaid card. As you can readily see, there are obvious and great advantages to the PASS program.

But there are important technicalities which must be met. First of all, you can’t wildly claim almost anything as a job goal to get Social Security to approve a PASS. Your plan must at least appear reasonable and achievable within four years. It must be endorsed in writing by some public or private social service, vocational rehabilitation or disability group or agency. Most importantly, you must put the income or assets you are “setting aside,” and which therefore won’t be counted in determining your SSI and Medicaid eligibility, in a separate bank account which Social Security will monitor for both deposits and balance.

If you don’t deposit the money in this account, or if you withdraw it prematurely for non-Plan purposes, Social Security will quickly uncover this; they make you provide details on your Plan account and submit data on account balances and activity as a condition of the program. In that case, your Plan would be immediately canceled, you might be required to pay back money you received from SSI or Medicaid if you had made a disallowed withdrawal or did not deposit disregarded money and spent it instead, and you’d lose both SSI and Medicaid. The official moral here is that your PASS should reflect a genuine future job goal that you’re really saving for.

Using PASS to Get SSI and Medicaid, Even If Your SSDI Makes You “Too Rich”

What if you’re not only saving for a future job goal? What if what you’re also aiming for is to have your “excess” income or assets disregarded so that you could get on SSI (and the Medicaid coverage it brings for you) in spite of SSDI, other income or assets that are above the SSI levels? This might be the case, for example, if you are in the 2-year waiting period for Medicare, and have no health coverage, and are “too rich” for Medicaid. Or, it could be that even Medicare, if you’ve already “served out” your 2-year wait, isn’t enough because it doesn’t cover all medical expenses.

Or, maybe a PASS would bring you other benefits you need. The artificially reduced PASS income – and not your higher actual income – is what other help programs such as HOPWA, Section 8, subsidized apartments, public housing, home energy assistance, food stamps, school lunches, WIC and TANF welfare must count by federal law if you submit documentation to them; so, having a PASS can save you rent and food money and increase your other benefits. In addition, states are allowed, but not required, to count the lesser PASS income, rather than the higher, total income for their ADAP, Ryan White and other assistance programs.

Perhaps one reason for your PASS was to get the Medicaid or other public subsidies you were otherwise “too rich” for. There must still be a work goal, of course, but many people are tempted to use a PASS because they need to get medical coverage they’d be denied otherwise. (Of course, the PASS and the otherwise-unavailable coverage it brings can only last so long---4 years at most---and then one must again face the regular, harsher Medicaid rules.) But working a PASS carefully can at least temporarily let one secure Medicaid and yet keep enough to live on during the PASS period. So, how can you have your cake and eat it too? How can you make the PASS program work for you? How, in short, can you keep money in a bank account that Social Security is going to monitor, yet have use of that money to live on?

The answer is the “secured” credit card. Secured credit cards are offered, often via late-night ads on television stations, to people with poor credit or no credit. They issue credit cards equal to, or sometimes twice as much as, the amount you deposit in the credit card company’s designated bank. If you make such a deposit to secure such a credit card (and note that you can do this even if you have terrible credit or no credit), that bank account – and continuing deposits to it and maintaining its balance – would qualify you for a PASS under Social Security’s rules.

But that account, because it’s “secured” (i.e., they won’t let you withdraw money from it until your credit card balance is paid down), also qualifies you for a credit card with an account limit as high as (sometimes twice as high as) the amount in the account. You can live on credit card charges or cash advances, yet keep an account open to satisfy PASS!

Of course, to keep this solution viable, you’d have to be sure to meet minimum monthly payments to the credit card firm. That should be particularly easy, though, since with each month’s deposit of the money your PASS plan requires you to put in the bank, the credit card company will helpfully increase your credit limit by that much! Better yet, if you’re fortunate enough to use firms that give you a “double” credit line, you can actually have access to more money than you deposited.

And for real icing on the cake, there’s one other detail you can arrange: when you take out the card, be sure to take the small-fee life, disability and unemployment insurance that’s offered to cardholders. This insurance will make your monthly payment once you invoke its disability or unemployment clause, and will pay off your balance when you die. This kind of insurance is almost never meaningfully “medically underwritten” (i.e., use of pre-existing condition clauses and waiting periods, etc.); even if the literature on the insurance does mention such limiting clauses, they are rarely involved when disability, unemployment or death claims are filed.

But a word to the wise: don’t claim disability or unemployment while you expect to continue using the card, the PASS, or the secured account; your card will be canceled for future charges, and your account balance may well be debited by the credit card company’s insurer. This would be disastrous if you needed to keep the bank account untouched in order to meet PASS rules, and therefore to keep your Medicaid and other benefits available.

If you have literally no assets to leave anyone, it may not be worthwhile to choose to pay a credit card balance life insurance premium. Its only function is to pay off the credit card bill after you die and thus prevent the credit card firm from going after any assets you hope to leave to loved ones. It’s your decision. To find out which banks offer “secure” credit cards and which ones have the best terms (interest rates, insurance options, “double-your-money” credit limits), call the non-profit Bankcard Holders of America at 1-540-389-5445. For a very nominal fee, they’ll send you the most current list.

Using a PASS and Section 1619 Together Can Bring Medicaid---Even Continued Medicaid--- To Workers Whose SSDI Ordinarily Makes Them “Too Rich” For SSI and Medicaid

Persons whose SSDI benefits make them “too rich” for SSI and the Medicaid coverage it brings—and who have enough income disregarded under a PASS to become SSI (and, therefore, Medicaid) recipients can then return to work and keep Medicaid indefinitely under Section 1619. For example, if in 2005 someone’s SSDI was, say, $1,000 monthly he would be “too rich” for SSI and Medicaid in most states. That person could get a PASS approved that called for setting aside and saving enough of his SSDI monthly (for a PASS job or training goal) so that his remaining income would make him poor enough for regular SSI and Medicaid. As someone who has now thus arranged to be, in effect, “starting out” as an SSI recipient, this person could then begin working—and even retain Medicaid for many more months under Section 1619 even after earnings rise above the “normal” SSI level .

So, for those who need Medicaid as the solid foundation for a return-to-work attempt—but who have SSDI above the SSI and Medicaid levels—getting first on the PASS program and then on the Section 1619 program is an imaginative way to secure that Medicaid coverage which they would otherwise be “too rich” for!

Automatic 5 Month Extension of Food Stamps For Disabled With Children Returning To Work

The Food Stamp Reauthorization Act of 2002 was signed into law on May 13, 2002; Section 4115 of the Act---while meant to offer at least a 5 month extension of food stamp eligibility-- without counting either the new earnings or any lost TANF (welfare) income which might otherwise cancel or reduce a food stamp allowance for to those leaving TANF to return to work---can sometimes also be applied to those who are not on TANF but are returning to work from SSI or SSDI if they have minor children in the home. For details see http://www.frac.org/html/publications/elderly-reauth.PDF (Adobe PDF).

Disregarding of 1^st & 2nd Year’s Earnings of Those Returning To Work Under Housing Aid Programs

In 2001, HUD finalized regulations (24CFR5.617) that disregard (in determining federal housing assistance programs’ eligibility and fixing the rent amount) 100% of one’s earnings in the first year back at work, and 50% in the second year back at work, for those on TANF, SSDI or SSI who begin employment again. (But these regulations do not apply to Low Income Housing Tax Credit -subsidized housing nor to many of HUD’s Section 202 projects either.)

Using Employer Tax Credits To Get Hired and Getting EITC Tax Refunds For Yourself

One little-noticed provision of the Ticket to Work and Work Incentives Improvements Act of 1999 was the extension of tax credits available to employers who hire the disabled, former welfare and food stamp recipients, ex-offenders, younger residents of inner-city and rural Enterprise Zones and other disadvantaged persons.

For example, the Work Opportunity and Welfare-to-Work Tax Credit can be worth up to $3500 for the first full year of employment---and up to $5000 the second year--- to an employer who hires a targeted person. In addition, the IRS also offers employers an Empowerment Zone Employment Tax Credit for hiring persons in New York, Philadelphia, Baltimore, Washington, Chicago, Detroit, Atlanta, Eastern Kentucky, the Mississippi Delta and the Rio Grande Valley; there are also 94 additional, smaller enterprise zones in most large and medium inner cities and in poor rural areas.. In addition, the Disabled Access Credit can benefit employers who incur costs for architectural, equipment and other qualified physical workplace changes to accommodate a hired disabled person.

Visit the Internal Revenue website at www.IRS.gov or call 800-829-1040 and download or order IRS Forms and Instructions 8826, 8844, 8850 and 8861 ---and 8812 and 2441 (the new child credit and the dependent credit) as well as the EITC forms.

Disabled clients seeking to return to work who arrive at employment interviews with copies of these forms in hand will have a strong additional argument in favor of their hiring---if they are willing to disclose that they have been disabled or members of other targeted groups for whose hiring employers get these generous tax advantages. (They needn’t disclose their particular disabling diagnoses, but should be prepared to offer assurances, including doctor’s notes, that their impairment, with reasonable accommodations, allows them to meet core job responsibilities.)

(In larger organizations, those supervisors conducting job interviews and making hiring decisions are unlikely to know or care about these tax credit programs. Their decisions will likely be based only on their own immediate staff needs. More assertive clients might, nevertheless, increase their chances of being hired by sending copies of these tax forms with explanatory cover letters to such employers' personnel directors and chief financial officers---who are far more likely to care about the firm's overall finances----with the hope of enlisting their favorable influence on the hiring decision.)

Those leaving SSDI to work----and who are not also recipients of SSI, TANF (welfare) or food stamps, and aren’t 18-to-25-year-old Enterprise Zone residents---- unfortunately must first enroll in their state vocational rehabilitation program and then get themselves referred to that employer by vocational rehabilitation in order to make the employer who hires them eligible for the most generous tax credit—the Work Opportunity Credit (Forms 8850 and 8861). Fortunately, this burdensome bureaucratic rule doesn’t apply for hiring employers who take the other available tax credits------or even to the Work Opportunity Credit where SSDI recipients were also on SSI, TANF or food stamps or are 18-to-25-year-old residents of Enterprise Zones.

Low or modest annual earnings totals caused either by low beginner’s salaries or even by having started work in mid-year could well make those returning to work eligible for the generous Earned Income Tax Credit (EITC) for the first year or more back at work-----even if they don’t have children. (The EITC can not only bring a refund of all your withheld taxes. It can also cause a “refund” for even more money than was withheld in taxes. In some cases, the EITC can range up to $3,500 or more.) Visit the Internal Revenue website at www.IRS.gov or call 800-829-1040 and download or order IRS Forms and Instructions 8812 and 2441 (for the additional, more recently-enacted child credit and the dependent and child care credit---both of which are often at least partially refundable to modest income families) as well as the EITC materials. There are excellent descriptions of all three of these refundable, valuable tax credits at www.cbpp.org (at the EITC icon).

Every 1, 3, 5 or 7 years—and whenever overworked and backlogged Social Security offices learn that someone has begun work -–Social Security can and will schedule a Continuing Disability Review (CDR) to see whether that person is still disabled enough to get benefits. This review is conducted by the same Disability Determination Service (DDS) office which helped SSA decide whether you were disabled when you first applied. SSA policy materials (POMS DI 130150.065 B.5 and DI 28003.005 C) say that HIV cases are not to be given CDRs if they were approved in 1991 or thereafter. (But POMS DI 28003.005 C adds that if the initial approval was made before 1991, a CDR "should be completed "[emphasis added]). Adding to this is the fact that NL 00705.355, which is posted with POMS materials on the SSA website, seems to have been regularly used as a form letter telling post-1991 beneficiaries that any CDRs they’ve been scheduled for will not occur after all.

Effective with 2002, simply working, in and of itself, isn’t supposed to trigger a CDR, according to the Ticket to Work and Work Incentives Improvements Act of 1999 (although otherwise date-diaried CDRs can and will continue to be made and they could threaten benefits for those who recover or demonstrate non-exempt SGA). The law also “immunizes” from CDRs those whose work attempts are part of an Individualized (return-to-) Work Plan (IWP) approved by a state vocational rehabilitation department or a similar private Employment Network (EN) under the Ticket to Work law. IWPs last up to 60 months: during the first 24, a client need not work at all; during months 25-36, he must earn above SGA level for at least 3 months only; during months 37-48, SGA earnings must be reached for only 6 out of 12 months; and during months 49-60, earnings must finally push him over SSI and/or SSDI income levels.

But even though CDRs are suspended during successful IWPs, working can still bring greater scrutiny and a CDR by the DDS if you are foolish enough to return to work without first getting your work attempt approved by Vocational Rehabilitation or an EN—since only their sign-off will bring you immunity from a CDR.. If the DDS determines that you’re not disabled anymore, you’ll lose your SSDI or SSI. Even worse, if the DDS finds that you’re no longer disabled you’ll lose your right to Medicare or Medicaid too—even if you’ve already given up SSDI or SSI to work and you only need the Medicare or Medicaid alone!

So a good way to “immunize” yourself from being declared “not disabled enough anymore” by the DDS --and losing your SSDI, SSI, Medicare or Medicaid--- is by signing an IWP with your state’s vocational rehabilitation program or a local Employment Network (EN). Check under “vocational rehabilitation” or “rehabilitation” in the state government section of the telephone book for state vocational rehabilitation agencies; for ENs serving your area which can service persons with your particular disability, call (866) 968-7842. IWPs can and do offer protection from CDRs for many months before substantial time in training, classes or job placements have to be finally committed to or engaged in. This is important for protecting your benefits from a possibly threatening CDR if, in fact, you don’t feel completely ready to work because of your health, or if you discover (as is true in many states) that the vocational rehabilitation or Ticket EN programs are geared exclusively to mentally retarded or mentally ill people and only offer training and placement in menial jobs.

But a person who is has already begun an IWP with a state vocational rehabilitation program or Ticket To Work EN on the day a CDR finds that he supposedly stops being disabled is “immune” from being dropped from SSDI, SSI, Medicare or Medicaid. Again, this is so even if the DDS or Social Security declare him to be “no longer disabled”. This immunity lasts as long as one’s IWP with the vocational rehabilitation agency or the Ticket to Work EN is in effect (up to 60 months).

(The Ticket to Work law can even protect continuing Medicaid for patients whose remissions have, in fact, left them “no longer disabled enough anymore”—but only if their states specifically elect to allow such coverage as a sub-option under a wider, federally-offered option to extend Medicaid to working disabled persons with incomes above regular SSI and Medicaid levels (see below). Only a few states-- AZ, CO, CT, IN, KS, PA and WA, with OK and TX so far only thinking about doing so--- have taken this sub-option, however.).

Still another way to protect against being declared “not disabled enough anymore” is to make sure that your continuing health problems, symptoms and their effects on your daily activity capabilities is fully written up in your doctor’s notes and records—supplemented by your own and your loved ones’ personal diaries, datebbooks and medical logs. (For example, AIDS patients in remission might not have had any major opportunistic infection in months, have T-cell counts which have again risen and viral load counts which have sharply declined. Such patients could well be at risk of having a CDR declare them “no longer disabled”.)

But careful record-keeping—not just by the doctor, but also by the patient and his loved ones in their own contemporaneously-written letters, diaries, datebooks and journals—can document the many small, often-un-noted ailments which can support a finding of continued disability: Flu-like symptoms, exhaustion, sleep disorders, unsteady gait, numbness, pain, skin problems, anxiety, depression, digestive and cardiovascular abnormalities, mental confusion and inability for focused and concentrated thought are symptoms which can continue to qualify as disabling..

And fortunately—because they’ve often had to establish initial disability using these same “small” symptoms and impairments for patients who weren’t “lucky” enough to have the “big” symptoms and ailments (like pneumocystis carinii pneumonia [PCP]) named in Social Security’s Listings—HIV doctors, advocates and patients know well how to do this. Similar strategies can be employed for those experiencing remission from other disabilities in order to prevent a finding of “no longer disabled”—and the catastrophic loss of benefits that bring. Such strengthened, more accurate medical and personal records (and supporting statements from loved ones too) can then be submitted to SSA and the DDS when and if they order a CDR.

Option for State Medicaid Coverage of Employed Disabled Persons with Moderate Earnings

States, under the 1997 Balanced Budget Act (BBA) and the 1999 Ticket to Work and Work Incentives Improvement Act (TWWIIA), can offer Medicaid with federal support, at small premiums, to working persons with medically disabling conditions (who, even if they meet SSA’s clinical disability standards, SSA can’t consider “disabled” because they’re actually working and performing SGA) with earnings up to at least 250% of poverty (about $46,000 a year, after disregards, for one person in 2005), or even more, under TWWIIA. TWWIIA allows states to use even higher earnings levels and offers them more options (such as extra federal funds for those options). In all states that have taken this option (except MN, NM and OR, which have legally questionable minimum earnings thresholds) even part-time, self-employed and/or “chore”-type jobs like baby-sitting and lawn-mowing can qualify even ordinarily-“over-income disabled” to buy-in to low-cost Medicaid coverage; see www.barrierbreakers.com for details.

On a demonstration project basis, states can give Medicaid to “pre-disabled” workers at risk of full disability, also using generous income rules. They could even get extra federal money for doing so. No “waiver” is needed. But as of early 2005 only Mississippi and the District of Columbia (for HIV+ persons); Rhode Island (for multiple sclerosis patients); and Texas (for schizophrenia and bipolar patients) had successfully applied for such funding, leaving about $100 million authorized and available for such patients but unclaimed and unused by the states. The extra planning money can be used for this too.

As mentioned above, all states that cover the main, basic option under TWIIA (but not the BBA) to cover the working disabled can also give Medicaid under the same rules to eligible workers who recover from their disabilities while in the basic Medicaid working disabled program if they still have a potentially serious condition (e.g., HIV or chronic mental illness). AZ, CO, CT, IN, KS, PA and WA do this, and OK and TX at one time considered doing so. Here, too, extra federal money can help states do this.

States Offering Medicaid to the Working Disabled With Earnings Income Eligibility Level of Up To $46,000 Yearly or Higher

Approved & In Effect

Alaska Maine Missouri (dropped coverage in 2005) Florida (plans canceled due to budget shortage)

Arizona Minnesota Texas

Arkansas Mississippi Utah

Colorado Nebraska Vermont

Connecticut New Hampshire Washington

New Jersey Wisconsin

Iowa New Mexico New York

Indiana California Nevada

Kansas Oregon Massachusetts

Louisiana Pennsylvania Illinois

Thomas McCormack wrote the AIDS Benefits Handbook (Yale University Press), worked on SSDI, SSI, Medicare and Medicaid eligibility at the Department of Health and Human Services, did policy and advocacy work with several AIDS and disability groups and now consults for the Title II Community AIDS National network (TIICANN), Email him at tomxix@ix.netcom.com.

(Calendar Year 2005 and until figures are next updated in Dec.,2005; see POMS SI 02302.000 C.)

Section 1619(b) of the Social Security Act lets those already on SSI who return to work earn wages far above the SSI eligibility levels and still retain Medicaid as if they were on SSI. This can continue indefinitely, if earnings are low enough and if the worker continues to have the impairment which qualifies him for SSI disability in the first place.

(To be eligible, a person must start out on both SSI and Medicaid. Eligibility computations are done by SSA.)

To see if the ex-SSI recipient has begun to earn so much that he might be "too rich", even for this special Section 1619(b) Medicaid, Social Security has a list of state-by-state annual gross earnings "thresholds". If a person appears to have begun earning above the level for his state, Social Security will call him in for an evaluation.

Those who do, in fact, have wages over the level will have their continued Medicaid challenged, but they have the right to ask for an "individualized" Section 1619(b) determination. The individualized level consists of twice the state's current SSI eligibility level + $85 + the amount of your medical care Medicaid pays for. To help you with this "individualized" determination, 20 Code of Federal Regulations 416.269 and Section SI02302.050D of Social Security's own POMS Manual tells SSA workers to assemble these figures for you---if necessary be getting from the state Medicaid agency the amounts it spent on you.

NOTE: The threshold amounts in the following charts are computed in the following manner: