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"Dear Disability Diary"
Steps Towards Keeping Disability Claims on Course

By Per Larson

September 2002

Article: 'Dear Disability Diary': Steps Towards Keeping Disability Claims on Course

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 Software knowledge goes out of date fast. 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.

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.

Changes in Claim Determination

It is said a rocket is off-course 99 percent of the time but reaches its target because of many course corrections. So it is with claims. Woe be to the person who thinks a claim once approved is on automatic pilot.

The world constantly changes -- and that includes the world of claim determiners. Social Security (SSA) has scheduled a total revision of its auto-immune regulations (the ones dealing with HIV) for 2002 and 2003. The last changes in 1992-3 had a huge impact on those with HIV.

When protease inhibitors were labelled miracle drugs, factions within Social Security (SSA) under the first Bush administration, pushed to recall all HIV claims for review. Reality and sanity prevailed then. The states are implementing Congress's Ticket-To-Work legislation whose purpose is to get people off claim. Now we have a new generation of treatments; the current Bush administration may push recall and review further.

New group Long-Term Disability (LTD) insurance policy designs have become much more limited. Some now prohibit even education and travel. LTD may now be governed by HMO-like subcontractors. Some plans stop LTD claim payments if claimants pursue legal claims against the employer or the plan. Their performance is judged by the number of people turned down or returned to work -- not people helped, people accommodated. Some of these mercenaries can now unilaterally force rehabilitation plans. Just as in HMOs only active physician opposition can slow this.

In America, money is a treatment tool. Suddenly impoverishing thousands with HIV will destroy those best equipped to act up in the HIV communities.

Here's the front line of these trends, where general shifts become dangerous daily events:

  • A mislaid or unsent annual verification form is used as an excuse to cancel payments on your disability claim.

  • A new company just acquired your insurer. They believe in shaking the tree so they simply cancel payments to see what happens.

  • You're in an experimental study. Your initial response is good. The physician proudly reports this -- and your insurer uses this to cancel payments.

  • On an annual review your physician says you might be able to return to work under certain conditions. The insurer grabs that straw and concludes a return to work is in your future.

  • The insurer requests your records. One day your physician wrote "feels great!" They seize upon that as indicating you no longer need to be on claim.

  • You and your physician no longer note ongoing symptoms or visit time seems short and the symptoms are the same. The insurer takes the lack of ongoing documentation as a sign of significant improvement.

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 or (212)734-0941.

Back to the July/August 2002 issue of Body Positive magazine.

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