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CFSAC Meeting on Disability Issues

Testimony From Patients And Advocacy Groups

At our request, an advocacy group put out a call for complaints about LTD, ERISA, and SS, and received over 1600 replies.

Most were unwilling to testify, for fear of retribution
Some had been forced to sign “confidentiality agreements”
Several allowed me to provide their stories – anonymously.

Kim McCleary, executive director of the CAA, wrote me, “ “It’s not surprising to me that people are unwilling to be identified. Most all of the patient stories about disability that we’ve published …have been written under pseudonyms, out of fear of retribution by the LTD carriers.”

Some of the material submitted reads like a John Grisham novel. One patient wrote me: “Prudential …relentelessly harassed me when my article was released to the public last year. I was threatened. I was watched and followed relentlessly, received telephone hang up calls, some of my private property was stolen, my mail was severely damaged, some of it never getting to me or arriving 4 months later.”

Many complaints received were unfounded and undocumented . For example:

  • Stories of illegal surveillance with “stalking …trespassing…break ins”
  • “LTD carriers exert too much influence on state insurance commissioners”
  • LTD carriers financially influence judicial decisions
  • “I remember [Prudential’s private investigators] running me off the road…”


The majority of complaints and “war stories” dealt with Long Term Disability problems. In the words of one patient:

“An Economic War via Terrorism is being waged upon disabled Long Term Disability claimants! … A clear ‘Pattern of Illegal Practices’ pervades numerous LTD Carriers - These archetypes have expanded exponentially to constitute a concealed shared methodology or Modus Operandi (MO) practiced by (almost) ALL LTD Carriers. Over these more than dozen years, I have not heard of a single LTD Carrier or Administrator who has not practiced some or all of the following MOs.”

Here are the most common MOs, compiled by an advocacy group:

  1. Deny, Deny, Deny -- Not paying claims, regardless of merit, no matter what proof is provided. It forces the claimant to action when they are too ill to launch an appeal, especially one deliberately undefined.

  2. Delay, Delay, Delay -- Holding off payment of claims, partial claims, or legally directed settlements is another strategic tactic

  3. Drop, Drop, Drop -- Terminate claims arbitrarily, which forces patients to seek expensive legal counsel and medical documentation for appeal.

  4. NOT providing the RULES or governing 'Plan Document', or at least not the appropriate ‘version.’ ERISA levels fines of $100 per day to insurers that delay in providing this basic document, but advocates say that $100 per day is not a sufficient deterrent. They recommend large automatic fines for not complying, and fines should be directed to the claimant (separate from and regardless of the success of the claim).

  5. The ‘standard of proof’ is deliberately obfuscated. “Not delineating upfront what DOES constitute proof of disability allows for more abuse of PWC claimants, ‘spin’ placed on facts, and creates an easily manipulatible ‘moving target’, to render claim success impossible.”

  6. Habitually ignoring pertinent, objective medical evidence.

  7. Paupering the claimant -- (This is a major and frequent complaint of patients and advocacy groups) The LTD Carriers’ MO is to pauper PWC so they don't have the resources to obtain a proper medical diagnosis or medical care. Being impoverished by not receiving LTD, many claimants have to choose between paying for legal representation or paying for medication and medical care.

    Paupering the PWC also thwarts retaining legal counsel. Very few lawyers are willing to take on contingency a case where the compensation is minimal yet the effort and time will be made deliberately intensive by the carrier’s vast and well oiled legal machine.

  8. Delaying a lawsuit filing can further pauper the claimant. “In one case, even when lawsuit was won by claimant, Carrier appealed, successfully delaying payment.”

In addition to these MO’s, advocates point to other problems in the LTD system:

NOT rehiring the PWC -- “If the LTD Carrier deems the PWC healthy enough to work, then the employer should be forced to restore the PWC to the payroll full time, and not fire them if they can’t physically continue to perform their prior job duties. They have it both ways now.”

Debunk the ‘Secondary Gain’ Myth –- “No person would voluntarily choose to trade a challenging and rewarding, internationally accomplished professional career, a gratifying, active lifestyle, and future financial security, for one of destitution, bed / house confinement and a myriad of medical procedures and treatments. Plus when so ill, no one would subject themselves willingly to years of systematic slander, victimization, invalidation, ridicule, harassment, and terrorization.”

Changing the diagnosis to Mental Illness under duress to allow insurers and employers to arbitrarily apply a two year limit on benefits. “The LTD Carrier extorted my first diagnostician, as I initially presented with PTSD as first diagnosis, as they threatened this Doctor that they would not even pay STD if the diagnosis was not changed to Dysthymia.”

IMEs who have no active clinical practice in treating CFS should be automatically disqualified.

There should be no SSDI ‘offset’ allowed. Insurers currently limit their liability by reducing benefits by the amount of SS benefits granted. This is a losing situation for claimants (whose benefits are limited despite years of SS and disability payments) and the entire nation (who then foots the bill for these large insurers).

Claimants may be forced to sign a ‘confidentiality agreement’ to effect a settlement which hides the deceptive and abusive practices are pervasive of carriers.


A patient of mine from WV typified the problems seen with ERISA-based policies. He was a successful drug representative earning a good 5-figure salary. He and his wife are both disabled by CFS and FM several years ago. He applied for LTD, was approved, then the insurer terminated his payments for no good reason. He appealed, as permitted by the LTD contract, was always denied by the insurer despite supportive historical, physical, and objective evidence. When he sued for his benefits, he was unable to find an experienced disability attorney willing to file an ERISA suit in federal district court. We helped him to find an attorney, but he was denied. He appealed to the federal circuit, which refused to overturn the denial without a full hearing – which he no longer could afford. He and his wife survive on social security benefits.

“Of course there is the resulting loss off all my health, prescription and life insurances …disability retirement pension, and LTD incomes, having to spend my entire six figure retirement savings to live on, and the stresses of not being able to afford or obtain all the health care services we need with our multiple chronic medical conditions.”


One patient wrote me about difficulties she had filing for SSDI. After submission, her case was “buried at the local level for approximately” 5 months. She inquired about her cases progress, but calls went unanswered. After another 4 months she made more calls, which were not returned by the case worker.

She finally appealed to the Baltimore office of the SSA, who took a week to “exhume” the records. An adjudicator was assigned, but obtained only one of the many medical records that she was required to disclose on her original application. The adjudicator then gave greater weight to independent examinations contracted by the SSA, basically ignoring her treating physician’s records. She was denied benefits, and is appealing again.

Here are several comments from patients who have had difficulties with Social Security: “Many PWC receive SSDI initially under one or two symptoms (depression and anxiety are two most common) but actually have to navigate changing the diagnosis during later reconsideration.”

“Many PWC who try to continue to work, but can only do so part time are disenfranchised of benefits and lower their SSDI eligibility & credits without realizing it, and damage their health irreversibly by doing so.”

“Benefit delay inhuman The time it takes to obtain benefits is not livable. For me, it was 2.5 years and after one appeal, during which I was homeless for several months, [I was only] able to have only one meal per day, only during the week (via lunch at out-patient hospitalization program).”

“Time for appeal unrealistic - One person from my Support Group took 9 years to overturn on appeal. Yet another is still on appeal after 7 years - and is now destitute.”

Another patient’s experience with local Social Security employees is enlightening. She wrote: “SS disability employees…are uneducated about this illness, and when they see ‘CFS’ on a case they conclude that those ‘tired people’ can just take a nap for a year and wait a lot longer than ‘legitimately sick people’”.

Another patient complained that it was difficult to fill out the extensive application form for SS benefits. Even if she had the money to hire a representative, she opined, other issues (such as fatigue, stress, agoraphobia, feeling overwhelmed, and cognitive dysfunction) made it impossible to provide all the information requested.

One of my patients is a 45 year old female scientist from Chicago. She holds a doctorate in veterinary medicine and did clinical veterinary medicine for 8 years In 1995 she returned to college to pursue her interest and obtain a PhD in veterinary pathology. She was paid a stipend by the university while she attended grad school, but she did not realize that no monies were paid by the university into social security.

In the meantime she fell ill with CFS. She managed to complete her PhD, but was unable to work even part time. When she applied for SS benefits she found that so much time had elapsed since her last SS payment, that she no longer qualified. We now have a scientist with two doctorates unable to work, disqualified from benefits, and homeless.

* * *

I would like to acknowledge the assistance of Suellen Tritt, Judy Morris, Jill McLaughlin, and Kim McCleary in helping me to locate individuals who would provide testimony.

Respectfully submitted,

Charles W. Lapp, MD