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The Massachusetts CFIDS/ME & FM Association Disability Committee met in Fall 2014 with Mala Rafik, ESQ and Kate Sullivan, ESQ, two very knowledgeable disability attorneys, at the firm of Rosenfeld, Rafik, and Sullivan in Boston. The firm was established to assist disabled persons with disability legal issues.

Both Attorney Rafik and Attorney Sullivan are very experienced in successfully representing patients with ME/CFS, FM, Lyme disease, and other illnesses in their effort to obtain Social Security disability benefits and long-term disability insurance benefits.

This report will outline some of the current issues and problems patients encounter as they go through the disability claims processes—as well as how patients, their doctors, and their attorneys can properly respond to them.


More disability claims are being denied

Unfortunately, Social Security Administrative law judges are denying more claims—apparently because of political and fiscal pressures to reduce expenditures. Due to the recent recession, there has been a significant increase in Social Security claims. Therefore, to be successfu,l more care must be taken in submitting proper medical documentation of both the severity of the illness and the loss of functional capacity.

Note: Disability claims should be evaluated only according to Social Security law and regulations, no matter the actual quantity of claims. Our government has this obligation to the American people. On the bright side, Social Security has recently issued a new, more favorable Ruling on the evaluation of CFS/ME claims. See a full evaluation and explanation of the new Ruling.

Also, the two attorneys are seeing an increase in the rejection of ME/CFS and FM disability claims by long-term disability insurance companies. Companies are demanding increased "objective" proof of disability, especially in the area of functionality. Again, claims, to be successful, must be more carefully and properly documented.

Long-term disability insurance: the different types of policies

Patients with CFS, FM, Lyme disease, and other illnesses termed as having "self-reported" symptoms (consisting primarily of pain, fatigue, and headaches) must know the type of long-term disability insurance contract under which they are insured—including its specific language. There are specific types of contracts, and each sets different eligibility standards and benefit allowances.

At the same time, different policies variously provide, limit, or exclude benefits to patients who, in addition to their physical illness also have some form of "mental impairment", including depression or anxiety.

Long-term disability policy limitations according to the type of physical illness

Historically, most long-term disability policies did not discriminate according to the type of physical illness. A medically-documented illness diagnosis and a properly documented reduction in physical and cognitive functionality were the required standard for an award of benefits. As long as a patient with ME/CFS, FM, or Lyme disease could establish through a physician's documentation both the diagnosis and necessary loss of functionality, then the patient would be eligible according to the contract language. Needless to say, the insurance companies would frequently attempt to deny benefits to those contractually eligible.

Many patients who have been employed for some years are still covered by these "older" contracts—and many companies still utilize these contracts for new and current employees.

A second type of "newer" contract limits benefits to two years to disabled patients with "self-reported" symptoms—again illnesses largely involving pain, headaches and fatigue. Moreover, these symptoms must be "verified on clinical examination" by a physician, or benefits will not be awarded. Some of these contracts specifically name illnesses such as CFS and fibromyalgia as having benefits limited to two years.

Long-term disability insurance: mental impairment limitations on benefits

There are also "older" and "newer" insurance contracts that impose different levels of restrictions on benefits when a patient with a physical illness also has a documented "mental impairment", including depression, anxiety, etc.

The "older" policies—many still in force—restricted disability benefits to two years when the disability was "due to" a mental impairment. A major difficulty for an ME/CFS, FM, or Lyme disease patient under these "due to" contacts was to ensure that the illness was not improperly diagnosed as a mental impairment: depression, etc. Many patients are familiar with being misdiagnosed as having depression instead of ME/CFS or FM. Secondly, many patients with these illnesses do have secondary or reactive depression as a natural response to having an unyielding, chronic physical illness. Still, under these circumstances, the insurance company could claim that the mental impairment was itself a disabling cause rather than a consequence of the physical illness. Then the disability would be "due to" the depression and benefits cut-off after two years.

The remedy to this problem was for a doctor(s) to document that the depression was "reactive" or "secondary"—only a result—of the physical illness. Therefore the disability was only "due to" the physical illness.

However, newer policies developed by the insurance industry (in favor of their own interests) changed the "due to" language to "contributes to". Therefore any medical documentation that indicates or implies that a mental impairment contributes to the overall disability and inability to work could have the effect of cutting off benefits after two years. For example, a person with ME/CFS has, naturally, some ongoing depression actually caused by the illness. However, the medical record indicates that the depression, in addition to the physical illness, would be a likely factor in the person's inability to work. Such documentation, or even an interpretation of the documentation, would likely mean a massive curtailment of benefits.

To combat an insurance company's seizing on any mention of depression or other mental impairment as a reason to curtail benefits, patients, their doctors, and attorneys must document that such impairments do not "contribute to" the disability caused by the physical illness. There should be a clear statement in the medical record by the physician(s) to refute any implication that a mental impairment contributes to the disability—the person's severity of illness and inability to work is entirely a consequence of the physical illness.

Also, it is prudent for patients not to offer, unless required to do so, information on emotional issues in their forms. Consult with a knowledgeable attorney if you are unsure as to what is required. You must answer questions truthfully, but you do not have to offer unasked for information.

Long-term disability policies and documented cognitive impairments in CFS, FM and Lyme disease

Cognitive impairments are well-known symptoms of CFS, FM, and Lyme disease. Research has shown that these impairments: short-term memory loss, word-finding, concentration, etc. are biological consequences of the physical illness and not psychiatric in origin. Under "older" insurance contracts, cognitive impairments, as long as they were noted as physically-caused, would be useful documentation in supporting the illness diagnosis and the loss of function.

Under more recently-written contracts, cognitive impairments resulting from the illnesses are more easily and frequently interpreted as mental impairments. The new Diagnostic Statistical Manual-V (DSM-V), the listing of psychiatric illnesses and conditions, contains a category of cognitive limitations due to physical causes. The insurance companies are starting to use this listing to categorize organically caused cognitive impairments as mental impairments—thereby enabling them to curtail benefits.

A proper response to this problem is to medically document that the cognitive impairments produced by the illnesses are organic in nature and not psychiatric or mental impairments. A physician and/or a neuropsychologist well-versed in ME/CFS or FM can provide such documentation. Neuropsychological testing by a tester knowledgeable about how to interpret such test results in ME/CFS and FM patients could be helpful in showing the organic nature of cognitive dysfunction. However, testers unfamiliar with the illnesses could easily interpret the cognitive impairments as psychiatric in nature. Such documentation could be devastating. Therefore an ME/CFS or FM patient must know, in advance, if a tester is experienced in interpreting tests in relation to ME/CFS, FM, or Lyme disease. If the tester is not knowledgeable, do not use that tester. It would be better to have no test than a misinterpreted test.

The most serious danger and vulnerability to long-term disability claims is a finding of mental illness or mental impairment. This vulnerability is substantially increased when the claimant is applying for both Social Security Disability and long-term disability insurance—or already receiving one form of disability and applying for the other.

There is a very serious difference in how Social Security Disability and long-term disability insurance legally treat mental impairments in qualifying or not qualifying a person for disability benefits. In the case of Social Security, benefits may be more easily awarded when a mental impairment contributes to a physical disability—or when there are separate mental and physical disabilities.

As you can see, however, the opposite can be the case with long-term disability insurance: mental impairments can limit benefits to two years.

In the case of Social Security, qualification for those with physical illnesses is made less difficult in the presence of mental impairments. Therefore, a disability lawyer, in order to assist the patient in qualifying for Social Security, may utilize depression or anxiety associated with ME/CFS, FM, or Lyme disease to help win the case—as long as the mental impairment is secondary to the primary physical illness and would not be interpreted to negate the physical diagnosis.

However, once this use of a mental impairment diagnosis is in the medical and disability record, it can be used by an insurance company to curtail benefit—the company may claim the record shows that the mental impairment "contributes to" the disability.

Thus, applications or potential applications for both Social Security and long-term disability insurance cannot be approached separately—they must be considered together according to one medical and legal approach. This problem dictates that patients who expect to receive both forms of insurance employ the same lawyer, experienced with LTD and Social Security, to handle both applications to make sure that any mental impairment documentation used for Social Security does not harm the patient's application for LTD. However, if there is no potential for long-term disability, then considered use of mental impairment diagnosis can be considered for Social Security.

Moreover, patients who expect to receive both benefits should never agree to use an insurance company lawyer to represent their Social Security claim. Most patients receiving long-term disability benefits are required by their insurance contracts to file for Social Security. Insurance companies often are willing, at no cost, to provide a lawyer to assist the individual in representing their claim. Patients, especially those with little or no money, will often see the free legal assistance as a positive. But such representation can be extremely risky: patient information submitted to Social Security could easily find its way into the hands of the insurance company. It is also possible that the attorney would attempt to shape documentation to win the Social Security case that would later be used against the individual by the insurance company. The attorney is working for the insurance company as well as his or her client. There can easily be a conflict of interest. This is not to say that attorneys in this position are unethical. But it is far safer for the patient not to employ insurance company referred attorneys.

The importance of documenting functional limitations for long-term disability insurance and Social Security Disability

Functional limitations refer to the severity of loss of physical and cognitive abilities to perform work activities as well as activities of daily life.

In an important sense, functional limitations are more important than diagnosis in the disability claims process. In other words, a person may have a documented diagnosis of ME/CFS, FM, or chronic Lyme, but without the required level of functional limitations he or she will be considered still able to work, and therefore not qualified for disability.

Both Social Security and long-term disability companies have increased restrictions on types of evidence they will accept to validate functional limitations. Formerly, both Social Security and insurance companies would permit functionality to be documented under two required criteria: sustainability and predictability. If these two criteria were documented with a doctor's statement, then the stated lack of functionality would likely be accepted.

Now, Social Security and LTD companies want more objective evidence of loss of functionality—the older standard of proof is no longer sufficient.

Attorneys Rafik and Sullivan find that certain functional capacity tests are helpful in providing such objective evidence—especially during LTD internal appeals. (An internal appeal occurs when a person has been turned down for LTD and utilizes the insurance company appeals process—before having to institute court action.) Ms. Rafik mentioned she has found that Spaulding Hospital provides a type of test that seems to be helpful in showing lack of functionality in ME/CFS and FM cases. These tests cost $500. Ms. Sullivan stated that she had not found neuropsychological tests particularly helpful.

She stressed the importance of maintaining a continuing relationship with the doctors who document your disability as well as building a continuing documentary record of the severity and chronicity of your illness and loss of function.

Both Social Security and LTD insurance companies conduct ongoing reviews of your disability benefits. You must have continuing, periodic, and up-to-date medical documentation of your illness, treatments, and functionality with which to respond to such reviews. Unfortunately, many patients with these illnesses find many treatments to be ineffective and therefore go to their doctors at less frequent intervals, sometimes stopping for long periods. Patients on disability cannot afford to do this. It is very critical to maintain a continuing documentary record—especially doctor's office notes verifying symptoms and objective illness signs. Also, records of all laboratory and other tests should that verify or indicate the illness should be made a part of the continuing record. When periodic reviews occur patients should make sure these documentary records are submitted.

Whenever discussing continuing medical care for ME/CFS and FM patients, it is important to keep in mind another reason for not staying away from the doctor when experiencing a new or changed symptom. Many patients consider such symptoms just another of the many symptoms of their illness. However, new or changed symptoms may not be a fluctuation of their illness; ME/CFS and FM patients are not immune from developing other illnesses, some of which may be serious. As we know, many serious illnesses can be controlled or cured if caught early enough. Don't avoid going to the doctor and later regretting it.

Surveillance by long-term disability companies

Periodic surveillance of a long-term disability insurance recipient is not infrequent. However, there are rules the agents must follow. Agents cannot be on private property. They also have to register with the local police department. If an individual is fearful or concerned about any potential threat, he or she should call the local police department for clarification. Obviously, if surveillance is suspected, don't go out and do hours of yard work which would, in any case, make you sicker.

Other topics

Attorneys Rafik and Sullivan also provided other names of attorneys experienced in Social Security, LTD, disability retirement, and employment law cases (for reasonable accommodation) to add to the Massachusetts CFIDS/ME & FM Association lawyer referral list. If you want names of attorneys in these disability areas, the Association can provide you with referrals.

The Association wishes to gratefully thank  Kate Sullivan, ESQ and Mala Rafik, ESQ for the sharing of this essential knowledge and experience with ME/CFS, FM and Lyme disease disability law and practice. At the same time, we wish to thank them for their skilled and continuing efforts to assist those who need this type of legal representation.