Disability and Chronic Fatigue Syndrome (ME/CFS) Part I: Helpful Hints on
Getting Disability
Studies suggest that employment rates of people with chronic fatigue syndrome
(ME/CFS) are low; 15% are believed to work full-time and less than 50% work at
least part-time. From one third to one half of CFS patients in the U.S. may at
some point become unemployed and many of them will depend on the U.S.
government’s safety net to help make ends meet.
The U.S. government runs two disability programs, Social Security Disability
Income (SSDI) and Social Security Income (SSI). SSDI is an insurance program for
workers that almost all employees in the U.S. pay into*. In order to qualify for
the program you must have worked for five of the last 10 years. The extent of
the benefits you receive from the program depends on how much you’ve put into
it. SSI is an insurance program for impoverished people who were unable to meet
the criteria for SSDI or for disabled children.
Disability has its costs; besides having an income that’s usually far lower than what
the patient is used disability can also lead to social isolation as well. For patients no longer able to withstand the rigors of work,
however, disability can provide a financial lifeline and a chance to recover at
least some of their health.
Because these programs require that applicants document their inability
to work chronic fatigue syndrome (ME/CFS) patients must gather extensive
evidence regarding their limitations.
Assisting patients in documenting that is what these pages are all about.
Helpful Hints Regarding Disability
Be Patient - The disability process is
time consuming and often lasts well over a year.
Early in the Process Expect the Worst - Expect your disability claim to be
denied at least twice. Ken Casanova, the author of the Mass. CFIDS Association's
guide to disability in CFS guide states that ‘very often people are rejected
at the initial application stage and at the reconsideration stage without a
complete and fair review of their cases". This is not unique to chronic
fatigue syndrome; many people with other diseases are rejected early in the
process. Expecting ‘fairness’ early on is unreasonable. It is during the third
and last stage of the disability process at the administrative review before a
judge that most chronic fatigue syndrome (ME/CFS) patients win their cases.
Maintain An Ongoing Relationship With a Physician - Since the SSA wants
evidence of a chronic disease it is important that you see your doctor
regularly. Lapses in your medical record will cause the SSA to question the
seriousness of your illness.
Keep Your Doctor’s Records – Physicians are required to give you copies of
your medical record if you ask. Keep a copy of your records that you can provide
to the SSA when they ask. Many patients see multiple doctors over time and
getting records from each of them can be problematic.
When one patient’s doctor received a heart transplant as the patient was
preparing for a judicial review of his case the doctor’s office stopped
communicating with the patient and the Social Security Administration. The
patient subsequently learned that the doctor had never done the disability
evaluation or provided the SSA with the patient’s medical records. Efforts by
the SSA to get the patient’s medical records were returned ‘Clinic closed". Not
long afterwords the doctor re-opened his clinic but the patient lost his case.
Find a Doctor Knowledgeable in Chronic Fatigue Syndrome (ME/CFS) and (hopefully)
Social Security Disability Use local resources, a support organization, or
the CFIDS Association of America to direct you to a knowledgeable physician who
can accurately document your condition.
Tell your doctor you're seeing that you're planning to apply for disability and
will need his/her evaluation and are willing to pay for it. (Once you are
embarking on a disability the kinds of notes your doctor takes will probably
change (become more detailed). Some doctors are unfamiliar with the disability
process or simply don’t wish to take the extra time to prepare an evaluation may
be hesitant about providing this service.
If your doctor appears to be uncomfortable with producing a disability
evaluation then look elsewhere. A less than sympathetic or an ignorant physician
can torpedo your case by either intentionally or accidentally phrasing his
evaluation in ways that leave the seriousness of your case open to
interpretation.
If Necessary Educate Your Physician About Documenting Your Case – If your
physician is not experienced in producing disability evaluations but is willing
to take this on educate him/her about how to produce the most effective
evaluation. These pages provide you with resources you can use to help your
doctor prepare an effective disability evaluation.
The best physician evaluations explicitly state the cause and degree of your
disability. Poor physician evaluations, on the other hand, characterize your
condition in nebulous terms which insurance company lawyers or government
reviewers can twist to their own advantage.
Fill Out the Social Security Forms Correctly –Fill out your forms in ways
that can improve your chance of success. Check out attorney Scott Davis’s
Five Tips for filling out the Social Security forms for chronic fatigue
syndrome (ME/CFS) patients.
Find a Disability Lawyer – The vast majority of patients receive their
disability only on the third (and last) review of their case – before a judge.
After you have been rejected twice you should strongly consider hiring a
disability lawyer or legal representative to present your case. Most disability
lawyers work on a contingency basis; they are not paid unless they win, and then
their fees are restricted to 25% of the award up to a limit of $4,000. Some
lawyers will guide you through the entire process.
Finding a lawyer knowledgeable in chronic fatigue syndrome/fibromyalgia can be
extremely helpful. Your lawyer’s job is to skillfully translate evidence from
your doctor, co-workers, family, etc. into a package that convinces a disability
judge that you are unable to work even a simple, sit down, unskilled job.
Check out how one lawyer successfully argued two cases
- I represented a Fibromyalgia client before a Judge who called a psychiatrist
as an expert witness. The Judge granted benefits on the ground that my client’s
"fibro fog" was equivalent to a chronic state of anxiety - a psychiatric
condition.
- Two weeks later, I tried a different Fibromyalgia case before another Judge in
the same hearing office. This Judge awarded benefits (correctly in my opinion)
on the basis of a combined impairment - recognizing the combined effect of
Fibromyalgia’s impact on my client’s physical and mental condition.
Patients With Part-time or Intermittent Work Records Beware.
If you’re
employed you’re entered into the Social Security Disability insurance system*.
Full time workers typically have five years after they’ve stopped working to
prove to the government that they’re disabled but if you’re working part time or
your work record has gaps in it then you may have far less time. (This is one
reason it’s important to see a physician regularly to build up a strong case
while you’re still working – you may not have the time to build a case later.)
If you’re not working regularly then check with the SSA to see how much time you
have to prove your case.
One CFS patient underwent extensive tests to verify his disability a year after
he stopped working only to find his ‘coverage’ ended six months earlier because
of his intermittent work record. Despite having documented impairments he was
denied disability on grounds of inadequate documentation.
*If you’re a student working for a University you may not be paying Social
Security taxes and therefore will not be eligible for Social Security
disability. Check your pay stubs to see if Social Security taxes are being
removed. If they’re not then you're not covered under Social Security disability
system. Ask your employer to start taking Social Security them out of your
paycheck.
Prepare Now Even If You're Working
- People with chronic fatigue
syndrome (ME/CFS) who are currently working should create a medical record that
will support a disability claim later if one is needed. Among other things they
should consider using the health insurance they have available now to get the
type of tests done that will support a disability claim. Note that many of the
tests doctors give chronic fatigue syndrome (ME/CFS) patients do not help the
patient build a strong case for disability. (See below).
Get the Massachusetts CFIDS Associations Guide to Disability – This guide, which is available for free, is by far the
most complete guide to disability issues for ME/CFS patients on the net.
Read Scott Davis’s Papers on Chronic Fatigue Syndrome Disability
– Scott
Davis is an attorney who specializes in ME/CFS disability. His articles provide valuable tips on how to prepare your case.
Read Jonathan Ginsburgs
Tips for Winning a Fibromyalgia or Chronic Fatigue
Syndrome Disability Case...and...What actually happens at a Social Security
Disability Hearing?
Dig Deeper! Part II: Disability - Getting The
Diagnosis