Go to my essays on Living with ME-CFS
Go to the CFIDS/M.E. Information Page


Testimony before the
Chronic Fatigue Syndrome Coordinating Committee (CFSCC) of the
U.S. Department of Health and Human Services
Washington, DC
April 2005

Disability Issues for
Patients with
CFS/M.E.

Mary M. Schweitzer, Ph.D.
Representing
Disinissues, the Disability Insurance Issues internet list
(over 2000 members)

Social Security Disability Insurance (SSDI)

When the CDC’s 1998 prevalence estimate for CFS is combined with the U.S. Census’ current statistic for the U.S. population, the result is an estimate of 560,000 current CFS patients.

Other studies have indicated that at least one-fourth of these CAN NOT work full time.

According to a report to the CFSAC by the Social Security Administration, only 500 patients with CFS currently have SSDI.

If that was an error, and the number is 5000, it would still leave 140,000 patients unable to work full time, and of these, At least 135,000 patients without SSDI.

WHY?

Social Security intake workers are no different than the general population. It has been noted that there is considerable geographic variation in the number of people accepted for SSDI by intake workers. Research has suggested that the reason for this variation has nothing to do with the financial requirements of the particular state, or direct pressure by high-level politicians. Rather, the political culture within which the intake workers operate makes the difference.

In other words, if the local perception of a person on disability is that he or she is a deadbeat, then intake workers will be less likely to approve cases. [Keiser, 1999]

As long as the public remains unaware of the prevalence and severity of the disease called Chronic Fatigue Syndrome, intake workers will continue to deny disability to CFS sufferers.

Note the difference between the instructions for finding a patient with CFS disabled, and those for finding a patient with MS disabled. It is no wonder that an intake worker would find the a decision regarding one of the diseaes much easier than one regarding the other.

This conjecture is further supported by the evidence that the majority of CFS cases that make it to the ALJ level are accepted – that is, the initial intake worker’s determination is reversed.

This would be a problem for SSA, not the patients, except that the majority of patients who fail at the intake level never appeal. Over and over again, working with patients, we have found they did not even know they could appeal.


Other Problems with SSDI and CFS

CDC has noted that 90 percent of patients with CFS are women. Hence, problems that impact all women who apply for SSDI affect 90 percent of patients with CFS.

More men than women qualify for SSDI to begin with. Women are more likely to have remained outside of the work force to raise families, and women are more likely to work part-time. These women, for whom SSDI is no use, have traditionally looked to a different social program for assistance: AFDC.

The Disability Research Institute, analyzing the 1994 and 1995 National Health Interview Surveys on Disability, discovered that while women account for 53 percent of SSDI applicants, but only 40 percent of recipients. [Kennedy et al]

Because women account for 90 percent of CFS sufferers, any systemic bias in the response of SSA to the debilitating conditions – particularly autoimmune diseases – that affect women will negatively impact CFS patients.

There are other reasons behind the difficulties CFS patients encounter when applying for SSDI.

The application form is itself a barrier to patients suffering from a condition that strongly impairs cognitive functioning. When asked about their disease, more patients with CFS note the problem of what they call brain fog.than problems with fatigue. Asking a patient with severe cognitive dysfunction to fill out a complex form – and then hold them to any inconsistencies – is as much an impingement on their ADA rights as requiring a paraplegic to return the form, in person, to a second floor office in a building with neither elevators nor escalators.

In an informal survey conducted among members of Disinissues (a discussion list for patients concerned with disability insurance problems – mostly having difficulty understanding the process or the form), patients reiterated over and over again that the process itself was highly stressful and caused a worsening of their symptoms. This is, of course, not a scientific survey, because the participants were self-selected. However, it should be of some concern that patients also consistently reported that it took from 6 months to one year to receive an initial determination. Those who were rejected and chose to continue the effort waited 1-3 years for a final approval. Most who went past the initial stage hired a lawyer, and that money came from the lump sum payment that was supposed to make up for the years that the patient did not receive SSDI, despite being deserving.

Where do CFS patients turn when they are denied SSDI?

A study by the Institute for Women’s Policy Research found that among female-headed households, women with disabilities, as well as those with severe disabilities and those taking care of children with severe disabilities, were most likely to turn to AFDC (Aid to Families with Disabled Children), when that program was acftive. Today, 46% of female-headed households in TANF (Temporary Assistance for Needy Families), the program that replaced AFDC, have either a disabled mother or a disabled child who must be cared for by the mother. Government rules restricting participation in TANF to five years in total represents a particular hardship for women and children. Since it is difficult to be approved for SSDI with CFS – and since the majority of women with CFS do not even know why they are so sick – it is logical that many women with CFS are dependent upon TANF, and risk seriously exacerbation of their disease, if not outright collapse, if the government tries to force them “into the labor force”. (Lee, et al, 1992).

The same study found that women were much less likely to be on SSI (Supplemental Social Insurance). They did not indicate whether this is a function of an institutional bias against disabled women, particularly those with families, or dwindling assets for SSI within the states.

Social Security Disability and TANF both represent a miniscule percentage of the entire federal budget. It would be disastrous for CFS patients if there were cutbacks in SSDI, TANF, or Section 8 housing; there is not enough as it is.


Problems with Private Long-Term Disability Insurance (LTD)

Patients with Chronic Fatigue Syndrome have identical problems with private long-term disability insurers as they do with SSDI. That is, the larger culture permits dismissing the severity of the illness, with the result that CFS patients are easily denied the long-term disability promised in their employment contracts.

Unfortunately, ERISA, the federal program that was supposed to protect pension plans from being raided in unfriendly corporate takeovers is instead being used to protect insurance companies from fulfilling their contractual duties to the disabled.

Because of ERISA,

  • Patients no longer can turn to state insurance regulators for assistance with private LTD.
  • If a case goes to court, patients no longer may not ask for a jury.
  • The standard used in ERISA cases is not “preponderance of evidence,” as it was in the state courts, but “a deliberate pattern of intent to deceive,” something that would be difficult enough to prove without the additional handicap of having settled claims restricted by gag orders.
  • The result is that CFS patients who are denied private LTD have great difficulty finding lawyers to represent them. Without lawyers, they have no hope of challenging a decision by the insurance company.
  • There are other problems with private LTD insurance.

    Many patients are surprised to learn that they are only covered for 60 percent of their working income. In addition, the LTD company will require the patient to apply for SSDI, and then in the vast majority of cases, the entire SSDI payment will be deducted from their LTD payment.

    To those of us familiar only with how pension plans worked, the requirement that all SSDI payments be deducted comes as a shock. If there are children in the family eligible to receive dependents’ benefits, these will also be deducted from the SSDI payments.

    Mean annual earnings for women in 2000 were 73% that of men. When the 60 percent payment from private LTD for women is compared with that for men, minus SSDI payments, most women will receive very little from LTD. The requirement that their entire SSDI payment go to the insurance company essentially wipes out the value of a benefit that they had been paying for as employees.

    The main problem is that there is no major oversight agency for disability insurance today. When that is combined with the general public disregard for Chronic Fatigue Syndrome as a disease, it is easy to see why so few patients receive anything from the disability portion of the benefits contract that was negotiated by their employers as part of their employment contract.

    One final problem connected with private LTD must be mentioned. Several members of Disinissues are concerned that they are being required to sign long, detailed forms essentially reversing everything granted to patients through the Privacy Act.

    It is our recommendation that the committee ask a representative from the ERISA section of the Department of Labor to attend one of the CFSAC meetings so all these issues can be discussed and a remedy sought. It has been my experience that the employees there are cooperative, but they have little oversight power.

    It is clear to me that the failure to articulate a clear set of diagnostic criteria for the disease called “CFS” in the United States has had devastating financial effects for its victims. It is well past time that the committee take a serious look at all tests that are currently in use, as small as the “Positive Romberg” and as complex as the 37kDa Rnase-L Factor. We cannot continue to portray this disease as one of only “self-reported” symptoms.

    Finally, I wish to urge the committee with all my heart that a report be sent not only to the Secretary of Health and Human Services, but also to Congress, on behalf of all patients with Chronic Fatigue Syndrome, asking that the relatively minor funding set aside for SSDI and other poverty programs not be dropped or short-funded.

    Thank you.
    Mary M. Schweitzer, Ph.D.


    Return to the ME-CFS Information Page
    Return to Mary Schwitzer's Essays
    Contact the webmaster