"Dear Disability Diary"

The cancellation of a disability claim is a nightmare with no easy, good solution. The cost of a rebuttal can reach five figures. Many lawyers won't take these cases on a contingency basis. You're between a rock and a hard place: suddenly losing your stabilizing income, not able to take a comparable job, you may be tempted to sell out your future security for a lump sum. Going into debt on a gamble a lawyer will succeed or having your life caught up in a legal battle may not be acceptable.

A return to work may be fine in theory, but dicey in practice. The work world can require 130 percent hyper-performance, not the 100 percent of yesteryear. Software knowledge goes out of date fast. Dot.com survivors seem willing to work longer hours. Employers offer part-time or free-lance jobs -- without benefits. Americans with Disability Act (ADA) accommodations are increasingly questioned -- leaving little leeway for doctor's visits, bad moments, or medical relapses. Working at home is still rare. The working disabled may earn enough but at the expense of their health capital.

Claim Defense

This nightmare doesn't have to happen -- if you wake up and act now. With preparation, precaution, and planning, claims can continue on course.

Protecting successful claims requires the same skills needed to get approval: understanding what insurers and SSA consider significant, speaking their language, marshalling facts methodically. It means recognizing that only symptoms disable -- not diagnoses or lab measures.

With SSA and LTD claims, there are specific things to do day in and day out to keep a claim on course, to prevent problems, and to ensure that it's the insured -- not the insurer -- who ends a claim.

Continuation of benefits is NOT automatic. Little in life is. Review forms are not formalities. They're opportunities for bureaucrats to exercise power. They're fishing expeditions where a slip, an omission, an idle comment, or an attempt to be fair will indeed be seized upon. These bureaucrats are continually trained, their managers get new directives -- and incentives. Companies are acquired. Strategies and tactics shift.

Here the best defense is a good offense. Those who continue on claim can make lemonade out of the lemon of reviews. They can make them opportunities to yet again make utterly concrete and clear the minute detail of not just what ails them but what disables them.

The Bad-News Diary

The most successful don't wait for the forms to come. They keep a "bad-news diary," noting each sleepless night, each episode of diarrhea, each period of nausea, each onset of fatigue, each instance of confusion, each example of loss of memory, each period of depression. Jacques Chambers, a benefits consultant in Los Angeles who ran the benefits program at AIDS Project Los Angeles recommends listing how severe and long lasting each symptom was and what impact it had on daily routines.

This utterly detailed bad-news diary is where the pessimism and realism can all hang out -- kept safely between its two covers -- but photocopied and given to the physician at each appointment, inserted into the medical record, documenting the ever-present, sudden, unpredictable, uncertain periods of disabling symptoms. No one with memory problems should ever trust to memory to defend a disability claim. No one with flagging motivation, laid low by tiredness, experiencing mental confusion should expect to be able to defend benefits under the stress of a recent denial. The diary tells all. It builds the case repetitively, brick by brick -- day by day, hour by hour if necessary. It cumulates the petty and ordinary like bundles of straws, each weak, seemingly insignificant -- together a mighty statement of how things are overall.

Keep It in Writing

If a query is made, avoid phone contact. These things are so important they deserve the protection of writing. The middle class sounds too good on the phone. The middle class is trained to be polite, helpful, courteous, and competent; all that works against the claimant. Beware of responding promptly, doing several things at once, appearing lively, being charming, not making mistakes, remembering things, being energetic.

Reports are made of visits -- of how good a claimant looks. Poorly paid clerks have the power of the pen. If you say 100 words and they write down 10 do you dare call them on it? Call a supervisor? Frustration in dealing with clerks can trigger anger and venting -- which further complicates a claim.

A Catch-22

The catch-22 of reproving claims powerfully is that responding well may be taken to be evidence of ability to work. This is why the information must often be poured into the form of physician letters and friend testimonials.

M.D. Pitfalls

Forms and queries sent physicians are where claim battles are fought. Yet this is usually a claim's weakest link. If an M.D. doesn't get or doesn't answer promptly, insurers have been cancelling claims outright. Ask when the next review will be held, note that date in your calendar, and call if paperwork hasn't been received by your physician.

Above all a claimant must be under the continual care of a physician. Don't cut back on visits. Insurers have seized upon isolated comments like "feels great" to cancel a claim outright. If the past claim has worked, don't fix it -- don't add too many new elements. Often, the best response is "no change," since adding things can trigger additional inquiries or even having to reprove the claim. Social Security optical character forms in particular should be "no change." Continuity and not creativity is the key.

M.D.s need and appreciate help with paperwork. Medical providers get no training in how to make forms sing or how to write powerful summarizing letters. They're not paid for paperwork. They're under the gun timewise. No one's warned them that diagnoses and labs alone rarely justify disability. No one's told them to say "see attached" when given only a tiny box in which to summarize in detail that most important judgment: what's truly disabling the ability to work. Some think that the M.D. credential should be enough to convince insurance clerks without providing irrefutable detail (it's not). Few understand the overriding need of those clerks to cover their tush, to prove to supervisors that an approval has enough supporting data. Few physicians realize that a powerful cover letter summarizing the impact of symptoms on typical job duties is as necessary and has more impact as a filled-out form. If the medical record is illegible or doesn't document the repeated manifestations of symptoms, a letter is needed to correct the problem.

The patient/insured can help medical providers with this task. Schedule special time for forms and letters. Supply drafts of forms or letters or get someone knowledgeable about insurance to do so. Supply copies of the bad-news diary to make sure symptoms continue to be documented. Give a detailed symptoms summary full of examples of how symptoms impede the ability to work as before.

The most important thing claimants should do is to continue seeing their doctors. Approval is continually reviewed, especially now that insurers look upon HIV increasingly as a chronic condition. The main thing insurers require is that the claimant be under the care of a physician. Slacking off on appointments -- especially with mental health claims -- provides insurers with unarguable grounds for cancelling claims.

Symptoms = Key

A claimant has one strength: detailed knowledge of symptoms. Recall how unpredictable symptoms are. Describe the number of times they occur, how long they last, with what intensity, how little warning, with what other symptoms, with what complications. If it happened once, it can happen again. If it could happen, it's worth noting.

Unpredictability itself becomes a major symptom with HIV. Remember side effects. Recognize the cumulative effect of low-grade, long-term, eating-away symptoms. Anticipate what might happen if a bunch of them happened together, especially at a time when all was already at low ebb. What has happened to friends could happen to us. Spell out what could happen if the tasks of work were added to the activities of daily living. Be graphic, embarrassingly real. Fecal accidents make clerks crawl. Tell what it was like to wake up in a pool of vomit or diarrhea. What could happen is a reality when it comes to returning to work. Unless a cure has occurred -- and no one's claiming that any more -- we are dealing with an ever eroding core of health while growing older and experiencing prematurely the evidences of older age.

Above all this is not the time for optimism. Especially for physicians. Yet optimism is a treatment tool for most M.D.s. Warn them to put this on the shelf when it comes to filling out insurance forms. This is the time for remembering the terrifying past, for anticipating the horrifying future.

Actions Checklist

Few claimants have the interest or experience needed to deal with bureaucracies which hold power over financial lifelines and who reveal nothing of how they make decisions. Disabled people on heavy medications may be the least able to prevent or solve these problems. Disability benefits require skill, patience, anticipation, and resources.

Be sure to arrange plenty of support. Critique each other's forms. Get help from peers, friends and family, support groups, social workers, lawyers, and financial advisors. Choose those experienced in helping people make and defend disability claims. Here are some things you can do now.

• Start with a running list of symptoms past and present, concrete and detailed. This is the time to tally, not discount, what has happened over time -- and what could happen. In talking about symptoms, show repeatedly what they could do to workday responsibilities and duties.

• Keep a bad-news diary, noting anything that occurs that could get in the way of being able to work. This is also a good treatment tool, to spot patterns of things before they loom large.

• If a symptom has occurred, even once, or might likely occur, write it down. There is often no room in some of today's lean and mean job environments for even small symptoms.

• Since today's jobs seem to require focus, cite any problems in everyday life with concentration, persistence, pace, memory or irritability.

• Use incidents to illustrate the impact of the symptoms, especially if they were embarrassing or disruptive. This is not the time to be polite.

• Forget diagnosis and conclusions. That's your physician's province. List individual symptoms instead. Nothing but hammering with the facts. Symptoms, not diagnoses, are what impact on the work situation. Report don't analyze. Let your physician take care of labeling and explaining.

• Low or high lab results don't always tell the true story about the ability to work. This is why SSA abandoned T-cell counts as a measure of disability years ago.

• Help your physician help you protect your benefits. Give a copy of the invaluable detail from your latest bad-news diary pages, asking that they be added to the medical record or, at least, commented on in the record.

• If there were symptoms since the last visit, don't discount them by saying, "I'm fine." Part of the job of being disabled is meticulous record keeping -- and the record that counts most is the medical record. This is the one occasion where complaints count, especially if they're repeated, even if you've voiced them countless times before.

• Get a complete copy of the medical record. If symptom and incident reporting are spotty or unclear, ask the physician to correct the record with a summing-up statement.

• If you are getting no support from your M.D., get a second opinion or have someone who has logical reason to have witnessed your symptoms write a testimonial documenting them in great detail.

• Mark your calendar for likely claim review times. Check your M.D. to see if a form has been received. After a review is successful, ask the insurer when your next review will be. If you move, inform your insurer repeatedly of your new address -- with all who've had contact with you.

• If there is a form to be filled out, make a special appointment just for that. Discuss the importance of records and official statements with your physician. Don't rush things. Discuss income protection as a treatment tool.

• Know your policy. Each one has its unique features. What is its definition of disability? Is the basis your own occupation, or any occupation? Does it change after 2 or 5 years? What do your experience and training allow you to do? You can hold your insurer to what your policy says -- if you understand it.

• List job tasks you did and those appropriate to these definitions. Then match these tasks against the symptoms list. Do your symptoms impact that? This is the question.

• Some insurers are shifting from short statements to lengthy questionnaires. Treat this as an excellent opportunity to spell out in concrete detail incidents illustrating disabling symptoms that have occurred -- using "see attached." Never squeeze answers into small boxes.

• A few insurers are sending claims adjusters out to visit insureds. With a friend present, use this visit to present your disabling symptoms and incidents in excruciating detail.

• Know that on phone calls or in interviews you can say, "I don't know," "I'm not sure," or "I'd have to think about that." You can also take time out, simply don't answer, or stop at any time you're tired or confused.

• Report harassment incidents to alert others but remember that obsessing about these abuses won't help much.

• Make sure you're part of a support group during this difficult period.

• If you have volunteered, get testimonials about symptoms from them that emphasize you came and went when your health permitted. If they noticed symptoms, they should say so.

• If you are harassed, get professional coaching from a financially or legally trained person experienced in responding to insurers.

• Insurers are not all alike. Check out your insurer's history and reputation. Check Internet disability claimant boards -- but be aware that the quality of advice given varies widely. Some smaller companies may aggressively cancel benefits simply to "shake the tree."

• Employ the burglar protection strategy. Make it less easy to attack your fortress so they'll move on to someone else. Consistent, clear records and these actions renew and reinforce claims, making bureaucrats more likely to back off.

• Remember what motivates clerks: CTB -- "cover thy behind." Bureaucrats want paper justification to continue benefits, especially with all the hype over the new drugs and pressures to increase profitability. Give them understandable data clearly focused on the inability to do work.

• If you want to try working, consider pursuing part-time or residual disability benefits first, if your plan has them. Major insurers may act supportively if a return to work is attempted. They may be open to renegotiating policy terms to extend protections during the return attempt. But if you do this, consider professional help.

Above all, don't give in or give up. If not ready for work, defending benefits is where it's at.

Doing so is also activism. If you stand fast, you're not only helping yourself but also helping others less able to defend themselves. By these actions we educate insurers to the fact that HIV symptoms and treatments are complex, and that people with this life-threatening illness need the income protection and stability that disability benefits provide.

Per Larson is the author of Gay Money plus nearly 100 articles on personal finance for people with HIV. He has appeared on "60 Minutes," "CBS This Morning," MSNBC, and "Money Works." He advises people on disability issues and may be contacted at PerLarson@aol.com or (212)734-0941.