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.
Defend Your Disability
Hope for the best, but plan for the worst. Keep a "bad-news diary" where you document your symptoms. Make sure your doctors record the symptoms you experience and those that you might be vulnerable to.
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.
Research Public Plans
Bone up on the rules governing Social Security's trial work period (see accompanying article). Two valuable publications are Working While Disabled: How We Can Help (SSA Publication No. 05-10095, January 1997) and Red Book on Work Incentives (SSA Publication No. 64-030, August 1995). Ask the local Social Security office for the forms that track a return to work so you can see what's involved.
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.
Check Private Plans
If you are a long-term survivor with private insurance that covered only your own occupation for the first two or three years of disability and any occupation after that, watch out for a reevaluation of your situation. Insurers may approve mental health claims easily at first, but then stop payment within a year or two. Insurer-initiated reevaluation is fraught with danger.
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.
Just as there are excellent insurers who honor both the spirit and the letter of their contracts, there have always been bad insurers who use technicalities and tricks to get out of paying claims.
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.
There's no need to avoid or hide volunteer work as long as it is entirely voluntary, is done as your energy and symptoms permit, and generates no income. Disability status does not mean living without involvement in the world.
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.
Run a Reality Check
Returning to work is a costly change with major impact -- both positive and negative. Think about and talk over the medical and psychological ramifications.
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.
Take a Reality Test
Join or create a support group to share experiences. Interview and get support from qualified and experienced social workers, therapists, and legal and financial advisors. Check out materials from HIV groups across the country; New York, Atlanta, Los Angeles, and Philadelphia are particularly strong. Find out which insurers are reputed to be particularly aggressive in denying and reviewing claims.
Exhaustively identify every benefit that is linked to disability and every one that is linked to work. Assess how much each is now used, the situations under which it may be used, and whether it disappears or requires requalification upon a return to work.
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.
Assess Your Credit and Debt
When disability looked like a one-way street, many people either spent down their assets, declared bankruptcy, or simply stopped paying their creditors. In some cases state laws protected disability income from the claims of creditors. Some people told their creditors about their illness and the cash crunch, and often they had their old balances written off -- especially if they were not large enough to justify the costs of partial collection. A wise few insured their credit card balances with credit disability insurance. Even then, some plans covered only the minimum payments, leaving large balances still due, or they paid claims for only the first year or two.
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.
Regularize Your Taxes
Going off disability may mean paying the piper on deferred tax bills. If you owe the federal government, unless you've made special arrangements you can expect the IRS to be waiting for you when you get that first paycheck. If you have a large tax obligation, you may be locked into the safe haven of disability -- a true financial catch-22 -- unless you can negotiate a cents-on-the-dollar deal before returning to work.
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.
Clarify Your Values
Our experience molds what we value, and your time on disability has probably caused a shift in your priorities. Meanwhile, without the benefit of a disability time-out, the rest of the country may seem more work-oriented than ever. How will you fit into that and use work to further what you've come to value? When in the past have you been truly happy, either at work or with something you worked for -- paid or unpaid? What qualities did these times have in common? Books and workshops with exercises on values clarification can help you reassess your priorities.
Work backwards from your desired ends. Work is just one of many things we use to get what we need and want. Visualize what the desired ends might be for you and for those you love. Run your life on fast forward through the lifestages you have ahead. Then, step by step, analyze how you get there from here.
If disability is the Land That Time Forgot, in the world of work Time Is King. Start mapping out scenarios. Group actions by stages. You're back in planning mode.
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.
Individualize your plan with marker events and time frames tailored to your own situation. Disregard traditional and perhaps misleading periods such as "monthly" and "annually." Create spending plans for the best, the worst, and the most likely outcomes. Remember that work brings its own expenses, and budget generously for the cost of transition.
Inventory Your Career
Check out your old industry, and how it's changed. Conduct information-only interviews with its key players, journalists, and old friends and colleagues. Update your map of trends, players, problems, and opportunities.
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.
Identify gaps that may exist between what you have to offer and what the marketplace now demands. Check whether vocational rehab agencies will fund training that would either fill the gap or give a new positive twist to your previous experience. Investigate whether unpaid employment could give you the confidence or skills you need to move ahead in the world of work.
Turn your lemons into lemonade. Identify the new skills you have developed in combating your illness and how to present them as assets or indicators of talent to potential employers or clients.
Rewrite Your Résumé
Organize past achievements functionally rather than chronologically. Don't list birth date, graduation dates, or work dates if they're not to your advantage. Resumes are sales brochures. Lead with your best. There's plenty of time to discuss the rest, after the offer.
Interviews are hard-won opportunities, and you need to be prepared. Identify tough interview questions and situations, and get a friend to run through them with you over and over, until your response is both natural and enthusiastic. Videotape your rehearsals and critique them from the employer's standpoint. Schedule the interviews for your least important job possibilities first so that you can learn from experience.
When you get an offer (or financing, if you are starting a business), take 24 hours to have a financial advisor analyze its long-term financial and benefits impact. Even if it doesn't affect whether you accept the job, it may alert you to needed corrective actions and identify additional perqs you need to ask for. Once an offer is given, small requests are customary, and often granted.
Private insurers, from your old employer and/or your new one, may be willing to bend the rules regarding limits on return to disability or preexisting conditions. It's best to have a third party, such as an experienced social worker, attorney, or financial advisor, explore this, both to avoid having the inquiry trigger a review and to achieve maximum protection. For example, while it's common for a return to disability to be allowed only within six months, an insurer has little to lose by extending this to twelve, or thirteen, or fourteen months -- if it means possibly avoiding a claim. Likewise, an employer may reduce a preexisting-condition period to get a much-needed employee.
Working itself may change your initial plans; much of this territory is uncharted simply because so few in similar circumstances return to work. Identify ahead of time what you should consider warning signs, and think through how you'd react to them.
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.
Consider carefully whether notifying key human resources personnel confidentially of your condition will protect your job or jeopardize your advancement. Remember that the Americans with Disabilities Act does not protect you unless you tell your employer about your disabling condition.
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.
Invest . . . Carefully
A common reaction to the energy and optimism the new drugs generate is to get fed up with sitting out one of history's great bull markets. Those flush with cash from viatication are especially tempted to rush into the market -- perhaps at its peak.
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
Back to the February 1999 Issue of Body Positive Magazine