by Gerald B. Kagan, Esq., and Jeffrey J. Cain, MD

image: man on phone with insurance papersJim's career was interrupted by the loss of a limb and its attendant physical and emotional challenges. Although he was optimistic about his future, he needed an extended adjustment period before he could return to work. Fortunately, Jim's employer had a disability insurance plan that he counted on to sustain him financially while he addressed his many new life issues. Jim applied for benefits, and his physician forwarded supporting data to the insurance company.

Surely, benefits were approved for Jim, right? Wrong!

Carol was a senior executive with a large corporation. Following a transpelvic amputation, her walking and balancing were severely impaired, and she had difficulty obtaining a suitable prosthesis and controlling her phantom pain. After a failed attempt to resume work, she applied for employer-sponsored long-term disability benefits, supported by physician opinions that she could not work for an undetermined time.

Obviously, Carol's benefits were granted for an extended period, right? Wrong again!


Unfortunately, such stories have become commonplace. Disability insurance companies are increasingly refusing benefits because they have lost so much money from years of their own disability-risk miscalculations.

Too often, information supplied by those with disabilities, their employers, and even their own physicians provide insurers with the justification to deny coverage. In today's hostile insurance environment, you are responsible for your own well-being. You cannot rely on your physicians to be your advocates (sometimes, they need their own)! You must be aware of the “rules,” and you must take charge, seeking assistance when necessary.

Here are some basic things that you should know and a few suggestions about what to do and what to avoid when seeking disability insurance benefits.

Some Background

Insurance companies are comfortable that their often-questionable, even bizarre, denials of disability benefits will be protected from scrutiny by anyone outside their own company because of the Employee Retirement Income Security Act of 1974 (ERISA). Decades of court decisions and industry efforts have morphed ERISA from a law intended to protect pensions into one that governs employer-sponsored health and disability insurance plans, “trumping” any contrary state law. A court cannot even review the merits of a benefit denial without first finding that it was made “arbitrarily and capriciously” – a difficult standard to meet. The insurance company's benefits decision will probably be sustained as long as there is some small amount of information to support it, even if there is a lot more medical evidence to the contrary.

Even in those few cases where the threshold for court review is met and the denial is found to be improper, the insurer must pay the employee only what it should have paid initially plus, possibly, attorney fees. There can be no additional damages for the company's wrongful conduct. Even achieving such a limited result can involve years of emotionally and financially draining court battles.

To make things worse, in 2003 the U.S. Supreme Court ruled that the medical opinions of a person's own treating physicians were not entitled to preference over an insurance company's opinion. In other words, if the physician whom you see regularly believes that you cannot work, but the insurance company's medical personnel whom you may never see states otherwise, your claim may be “properly” denied.

Some people believe that insurance companies are merely tightening their claims procedures; others wonder whether any incentive remains for an insurance company to pay benefits under ERISA-governed policies. The more cynical among us believe that the only reason that any benefits are paid is to enable insurers to sell more of their policies!

The Insurer's Proceedings

The insurance companies know that the deck is stacked against you. Therefore, you must thoughtfully approach both the initial claim (usually decided by an insurance analyst who is under pressure to keep payments at a minimum) and your appeal of a denial of benefits (which will be decided by people at the same insurance company that turned down your initial claim). You must provide substantial evidence of the merits of your case presented in a way that will “persuade” the insurer that you are not a person who can be mistreated with impunity. A well-planned and well-applied strategy is imperative, as is perseverance and emotional strength.

Some Dos and Don'ts of Advocacy

Together with your knowledge of what to expect in the claims/appeal process, consider these steps to take or avoid to maximize your chances of success.

DO find a patient advocate, if appropriate.
If you are well enough, you can probably file the initial claim yourself with the help of others with similar experiences. If your claim is denied, however, you should find an advocate immediately to assist you with the appeal. The Amputee Coalition can help you find someone. The risks of loss are too great to “go it alone.” The more that the benefits you seek are needed for basic living, the faster you should get help from an independent advocate. HINT: Find an advocate who will not charge you anything unless your benefits are granted or restored.

DON'T talk to insurance company personnel, if possible, and if you do, limit what you say.
The “concerned” claims representative on the other end of the telephone may be looking for information to cast doubt on your claim. HINT: Always insist that your conversation not be recorded. Tell the caller to speak to your advocate if you have one.

DO have your physician complete the attending physician statement provided by the insurance company
HINT: The physician should only complete sections relevant to his or her specialty. For example, an internist should not respond to questions about a patient's “psychiatric impairments.”

DON'T have your physician send office notes, if it can be avoided.
Even physicians with your best interest at heart are too busy to consider the consequences of what is scribbled in their files. The insurance company will take portions of the notes, often out of context, and use them as a basis for denial. HINT: Rather than sending notes, ask your physician to write a letter summarizing your condition and stating whether you are totally disabled and unable to work. Ask to review the letter before it is sent.

DO schedule regular appointments with your physician.
Disability policies require that a patient remain under the regular care of a physician. Periodic examinations are a must. HINT: Determine an appropriate interval for regular appointments (e.g., monthly), and schedule your next one before you leave the physician's office.

DON'T state emotional symptoms, such as anxiety and depression, as the cause of your disability.
Benefits for disabilities caused by mental or emotional disorders are strictly limited under most disability policies, and insurers will label your condition as “mental” or psychosomatic whenever possible. Almost everyone with a significant physical disorder will have some accompanying anxiety or depression, but they are not the cause of your impairments. HINT: If necessary, get a psychiatrist to rule out mental disease as the cause of your disability.

DO request and review a copy of the insurer's entire file about your claim, as well as other information permitted by ERISA, if your claim is denied.
You may discover facts that you can use in your appeal. HINT: The law requires insurance companies to explain your rights on appeal, but check them out independently.

DON'T forget to ask those helping you with your claim or appeal to contact you before responding to any requests of insurance company representatives.
Insurance companies may hire people to investigate you, and you should know if this is occurring. HINT: Keep a diary of anything that seems unusual. Call 911 if you think that you are being followed.

There are other things to do and to avoid when making a claim or pursuing an appeal. As noted, your personal condition will often dictate how much advocacy you can do yourself and how much help you will need. Remember, fairness and merit will not always determine whether you receive the disability insurance benefits you are entitled to; too often, the decision is based on whether there is a reason for denial. You do not want to unwittingly be the cause of that result.

Also, even though you are preparing for a full, productive life ahead, you will need a period of adjustment, which differs for each person. During such an adjustment period, you may be “totally disabled” under the definition in your insurance policy.


By the way, Jim and Carol both currently receive long-term disability benefits, which were obtained after they enlisted the services of a patient advocate.

About the Authors

Gerald B. Kagan Gerald B. Kagan is a patient advocate who helps people nationwide to pursue disability and health benefits. He practiced law for almost 30 years before taking on his latest labor of love. E-mail: gbkagan@aol.com. Telephone: 310/230-8333.
Jeffrey J. Cain Jeffrey J. Cain, chief of family medicine at The Children's Hospital in Denver, has been lobbying for many years for the right to include prosthetic coverage in medical insurance. He is a board member of the Amputee Coalition and chairs its Public Policy and Advocacy Committee. E-mail: cain.jeffrey@tchden.org. Telephone: 303/861-3980.

Copyright 2005 Gerald B. Kagan and Jeffrey J. Cain

Last updated: 08/18/2014
Back to Top