Thankyou to KC who maintains the faq on the newsgroup alt.support.lupus
for allowing me to print this article here.
Support at work-- Keep a daily diary of how you feel, including
every ache and pain. Get statements from co-workers and supervisors
relating to your ability to continue working, detailing how much
time you've lost from work because of sick days, doctor appointments,
etc. Have family members and friends give you statements as well.
The focus of these should be your ability to maintain employment.
Get strongly worded statements from your doctor(s) in reference
to your ability to function in a work setting. This should include
such factors as length of work day, exposure to fluorescent lighting,
stress level factors, amount of manual dexterity required to accomplish
tasks, etc. Some employers will make arrangements to modify work
conditions and schedules. Many will not do so voluntarily; however,
under ADA regulations, you may be able to get some accommodations
Applying for SSDI- The Social Security Administration recognizes
SLE as a potentially disabling illness and includes it in their
listing of impairments.
Their disability definition is as follows: the inability to engage
in any substantial gainful activity by reason of any medically determinable
physical or mental impairment which can be expected to result in
death or which has lasted or can be expected to last for a continuous
period of not less than 12 months. Note that whether you are adjudged
disabled or not has nothing to do with your disease components,
but rather your ability to work.
You need to contact your nearest Social Security Administration
office and request any brochures/pamphlets and forms needed to apply
for SSDI (Social Security Disability Insurance) provided you've
worked long enough to have sufficient withholdings to qualify for
this are under age 65, or else SSI (Social Security Income) if you
haven't or are age 65 or more.
The process of filing for and receiving positive results with SSDI
can take a year or more, and can be very stressful. Have someone
help you with the paperwork, keep track of your appointments, and
assist you in your battle. Many people enlist the aid of an attorney.
There are many legal-aid societies who have attorneys who will represent
you. Not all are knowledgeable about the Social Security regulations,
but the advent of disabling conditions being recognized in this
country have produced rather a fair amount of competent attorneys
in this realm. Social Security knows this as well. Any action you
might take with the assistance of an attorney will incur fees and
Social Security has a cap placed on the amount the attorney can
be paid to assist you. This is supposed to ensure you are not further
financially displaced by attorney fees when you become reliant on
the meager stipend you will receive from Social Security. In the
United States, the National Organization of Social Security Claimants
Representatives has a geographic listing of attorneys who deal with
disability claims. They can refer you to an attorney in your area.
Call: 1-800-431-2804 for more information.
When you apply for SSI, you'll be expected to prove your disability.
It's important in this regard that the claim application is complete
and that it offers enough information. The people reviewing it need
to be able to understand the full impact of lupus on your life as
regarding your ability to work and perform normal activities of
daily living. This is because Social Security Administration (SSA)
must be able to justify the disability payments they make. If the
forms submitted do not prove to their satisfaction that you are
disabled, then the SSA can not justify paying benefits, and the
claim will be denied.
In most instances, claims for disability are disallowed on the
first and usually second attempt (terminal cancer diagnosis being
the exception). Do not give up hope. When applying for SSDI, have
your medical records, and strongly worded statements from your doctor(s),
statements of ability from your supervisor, co-workers, family members
and friends. Social Security may require a physical exam by one
of their doctors (who aren't disease diagnosis cognitive) if you
do not have adequate medical documentation of your condition.
The first review(s) of your claims are done by those without the
authority to make decisions outside of very strict guidelines. They
are not medical personnel, nor are they inherently compassionate
to your needs. In fact, they office clerks who tend to be understaffed
and overworked. This is why most cases must be appealed to higher
authority several times.
A claim which is denied should be regarded as a notice that the
information provided is not adequate to prove disability. Therefore,
if this happens, the decision should be appealed to the next level.
You have 60 days within which to request another hearing. Then at
that hearing, you'll be expected to provide medical information,
statements, etc. Most cases end up for review by the Administrative
Law Judge, who does have the authority to make case-by-case decisions.
Approximately 80% of these cases are approved at that level.
To assist people with SLE in obtaining SSDI/SSI benefits, the Lupus
Foundation of America [ http://internet-plaza.net/lupus/ ] has a
recently revised and expanded publication called Disability Handbook
for Social Security Applicants, by attorney Douglas Smith. This
handbook is in two parts: (1) The Disability Workbook for Social
Security Applicants written for claimants applying for SSDI. (2)
The Disability Evaluation Guide for People with Systemic Lupus Erythematosus
written for applicants' physicians. Included in this guide is information
about certain key buzzwords and phrases (mentioned above) for which
SSA evaluators might be searching. It also has extensive information
about the application process and includes worksheets to help you
write a complete, well organized claim.
This handbook is available through the LFA National Office for
$32.95 (including shipping and handling), or you may be able to
get a discounted copy through your local LFA chapter.
With SSDI, comes Medicare. It will pay a portion of your medical
costs, but not your medications. The biggest expense for anyone
with a medical condition is usually maintenance medications and
there is a move in the Congress to address this issue. Regular doctor
visits, lab tests, and some forms of therapy are paid by Medicare.
However, if you have health insurance through an employer, or through
a spouse's employer, Medicare is the secondary payer. All claims
must be first submitted to the primary provider. (Note: All federally
underwritten health programs are the same in this respect.)
Continue, as much as possible, to keep a diary of your health,
how it changes, when it changes, and to what degree. All recipients
of disability insurance must have their cases reviewed periodically
and provide any information that is applicable to their condition.
And with SLE, many patients may be diagnosed initially with the
necessary 4 of 11 criteria but exhibit manifestation of other criteria
as the disease progresses. It is important to note these changes