February 1999
Disability can be a financial Land That Time Forgot, a limbo where adults are treated like children, where your illness has become your job. Leaving that land safely requires a roadmap.
The way back into the world of work can be as tricky as the way out. Start with plenty of planning, then take one step at a time -- with plenty of safe havens along the way, and a well-marked way back if you need it.
Remember that HIV often affects the very abilities needed for work in the '90s. Inability to concentrate, impaired thinking, forgetfulness, slowness of pace, irritability, intermittent but profound fatigue, frequent doctors' visits, diarrhea, nausea, night sweats, fevers, sleep disturbances, the need to nap frequently, weakness from weight loss, and depression all may hamper your chances of returning to work successfully. And don't forget the additional disabling factors that stem from the unpredictable onset of symptoms and the debilitating side effects and special requirements of HIV treatment.
The written regulations that govern how Social Security operates have not been changed to take into account the new HIV treatments. There is no mention of T-cell or viral load indicators in the regulations. People go out on (or are removed from) disability, not because of medical indicators, but because of documented symptoms.
The criteria that govern disability determinations are spelled out in the Code of Federal Regulations, Volume 20, Part 400-499 (www.ssa.gov on the Internet). Pay particular attention to the Listing of Impairments where what constitutes disability -- what has to be wrong with you and how it has to be proved -- is defined condition by condition.
Reread the rehabilitation, residual benefit, and partial benefit provisions of your group or private disability coverage. Private coverage may have features similar to Social Security's trial work period and clauses that cover recurring disabilities. Thus if an attempt to return to work fails, usually within six months, you may be able to get your disability payments back without a new waiting period or extensive reevaluation.
These procedures and their criteria are not spelled out in as much detail as they are by Social Security, so get assurances in writing. Calculate what the reimbursement and benefit reductions work out to in practice in various scenarios. Do this with the guidance of a professional experienced in disability insurance contracts.
These tricks include suddenly stopping benefits, thus effectively shifting the burden and cost of proof back onto the person on disability. Don't let this be your sole reason for returning to work.
Mobilize your doctor, enlist medical experts, get sound professional advice, and muster legal threats to fight back.
Most insurers do little more than ask physicians to update the status of people with HIV regularly on a simple form. But some claims, such as depression and back trouble, trigger extra scrutiny by insurers. Bad carriers send field hacks around to eyeball people on disability -- sometimes even going to the expense of hiring detectives -- but this can be countered by documentation and multiple medical opinions.
Bad insurers may offer lump-sum settlements to get claims off their books. Some will twist ambiguously expressed physician and patient statements, so great care should be exercised in wording legal documents. Don't volunteer extra information, especially on the phone. A trip out of town, for instance, may be used to raise questions about whether you are still physically unable to work.
Your insurer may invite you to consult a "rehabilitation specialist." Route this through your doctor -- who is, after all, the one who determines whether you can work. Find out if you have the right to refuse to see the rehab rep or to veto his or her recommendations; often you do. Remember that the rep is hired by the insurer and may have a conflict of interest when it comes to what's best for you. If you are pressured by the insurer, it might be prudent to get advice from an attorney or a financial advisor experienced in disability.
Creative activities are often not considered work, and intermittent income may be considered the sale of work previously produced. It may be wisest, however, to find outlets that are far different from the work you used to do for pay.
Negatives: Not working may be essential to your getting and staying better, and taking a job may upset a delicate balance. Your disability time-out may have permitted personal growth and reordering of priorities that could be swept aside by the imperious demands of employment. The freedom and equality often found among those who don't work are a far cry from what exists in the basically undemocratic world of work.
Positives: Positive stress keeps us alive and growing. Working hard allows us to test our abilities, assert our will, and realize our dreams. Work not only enables social interaction with people we otherwise might never meet, but it gives us public platforms for performance and participation.
Especially examine benefits you don't have now but could get if employed -- medical, disability, and life insurance; catastrophic medical insurance; credit card disability insurance; professional association or union-related coverage.
Going off disability can mean facing life without a cash cushion, with credit hobbled by a bad credit history, or with reactivated liability for past balances -- all at exactly the wrong time. Returning to work can trigger a sudden need for liquidity. This major life change amounts to a relaunch of You Incorporated, and it generates costs: transportation, clothing, grooming, lunch, computer, phone, fax, printing. The effort can be handicapped by the absence of cash or credit.
Cash and credit are also handy when it comes to new treatments. The costs of new drugs may be disputed by your health plan, but you have to pay for them until the dispute is settled.
Luckily, secured credit cards can be used to rebuild credit fairly quickly and easily. Protesting items on your credit record may also be useful, since the creditor must substantiate or drop the claim within a relatively short time after a protest. Consolidating loans may help, but may also only camouflage the problem. Check out your library or local book megastore for the many excellent books now available on rebuilding credit.
Tax obligations also lurk for those who sold their life insurance. If you sold a policy before January 1, 1997, and didn't pay the taxes -- perhaps thinking you wouldn't be around to have to deal with it -- there's clearly a potential liability. Talk to a tax attorney.
If you sold your life insurance after January 1, 1997, be sure that your tax file contains a medical statement to the effect that your life expectancy was less than two years at the time of the sale. New York sellers, and those living in states that license viatical settlement, must also be able to produce a copy of the buyer's -- not the broker's -- state certificate of licensure. Be sure that both you and the buyer have filled out all the necessary forms -- IRS form 1099LTC for the buyer, 8853 for you.
Learn contingency planning. Create catastrophe plans. Pick up project-planning pointers and techniques from business-planning books and software. This is like creating a new product or business, and the failure rate for a naive launch is equally -- alarmingly -- high.
Go to career centers at educational institutions and take career tests -- inventories of skills, interests, and style -- as a way of getting reacquainted with yourself. Find a qualified career mentor interested in guiding you back to the workplace.
Always check out changes in benefits. Go on red alert if your job security is endangered; losing a job to you is also losing benefits.
If symptoms emerge, you owe it to yourself and to your employer to disclose them and to work out accommodations so that you can keep your job and not let your work make your illness worse. Keep in mind that as long as you can perform the "essential functions" of your job, most employers must grant you reasonable accommodations. If your employer either misunderstands or is resistant to ADA protections, you may need legal counsel.
Symptoms and side effects may make it difficult at times to meet the demands of your job. If so, a temporary time-out under the Family and Medical Leave Act can help restore your health by reducing job stress and ensuring that treatments are followed to the letter. Become knowledgeable about FMLA provisions and protections.
Investment success is built on lessons learned from many experiences in investing. Even when markets move generally higher, some stocks fall. Successes generate public headlines; tragedies generate private tears. Jumping into overvalued securities may risk the very funds you need to create a future.
Unpredictability is a hallmark of HIV. For some the uncertainty of symptoms appearing has been replaced by the uncertainty of drugs petering out or crashing. Manageable or not, disease disrupts, and people with HIV can need cash fast -- especially during a downturn. "Last in, first out" is a poor market strategy, one that makes people poor. Financial security for people with HIV means salting away extra-high savings, protecting capital, and ensuring liquidity.
The best way for working people with HIV to save and invest is through tax-deferred compensation -- shifting funds before taxes into a company savings plan, especially if the funds are matched by the employer. These funds can be withdrawn either if disability returns or at retirement -- when tax rates are lower and when gains have been compounded without taxes.
The uncertainty of living with HIV means saying no to annuities and high-risk stocks that may require years to recover from a low. It also means staying away from broker commissions, which typically eat away 3 to 6 percent of an investment's value before it ever starts earning. It also means going for tax-deferred savings plans instead of pension plans that require a longer job commitment.
Saving and learning to invest are a vote for a better future, and that's what returning to work is all about. As your experience and your savings grow, what seems like risk now will become recognizable as opportunity. Then you can gradually increase your commitment -- and reap the ever-higher rewards of investing in ourselves in all of these areas.
And that is a winning strategy.
Photo by Fredda Tone