Jacques Chambers, CLU
No one plans on becoming disabled. Even people
with chronic diseases plan for and hope for a healthy future. They try
to maintain a healthy lifestyle; they stay current with the latest,
Yet, no one knows what the future will bring.
Although everyone should consider alternatives if the future holds
problems, persons with a chronic conditions such as hepatitis C have a
special need to look ahead and prepare for alternatives. They should
consider carefully in advance at what point, if their disease
progresses in such a way, they would prepare to stop work and file for
In addition to knowing what benefits are
available should disability arise, there is one other thing you should
be doing – just in case. And that involves your medical records.
Whether it is a private disability insurance
company or Social Security, disability is virtually always determined
by a review of your medical records. Only rarely are you asked to take a
physical exam from what they call an “independent” physician who is
Transitioning from work to disability is a major
life event with all the confusion, frustration, and emotional upheaval
such events can bring. Being awarded disability benefits can also be a
challenge. Sixty per cent of initial applications for Social Security
Disability are rejected. Insurance companies don’t release their
numbers, but it is probably not much better considering they are
profit-making organizations that have to account to stockholders for
the level of their profits.
Therefore, it is very important that your medical
records be thorough and complete, and now is the time to start getting
your medical record into a shape that will support disability, if and
when it is needed.
This is not going to happen without your
participation. The tendency in modern healthcare is for medical records
to be heavy on testing, diagnosing, and treating. Due to the limited
amount of time doctors spend with their patients, and the predetermined
entries in electronic medical records, there is frequently little
information on your symptoms, including their severity and frequency or
your quality of life, or lack thereof.
There are items that should be in the medical record in order to be approved for disability that are not always included:
Objective Symptoms are symptoms
that can be measured in a laboratory or otherwise confirmed
objectively. While blood tests may measure viral load, immune response,
and multiple other measurements, they do not directly relate to
current symptoms. Unfortunately, most of the symptoms of a person with
HCV are “Subjective Symptoms.” However, there may be tests that are not
normally part of the tests regularly performed that may provide some
evidence or help objectively to explain why certain symptoms are
present. The record also rarely describes what symptoms are related to
which lab result. That should be spelled out in the record as claims
examiners do not usually seek out such connections.
If and when your condition progresses towards
cirrhosis, more symptoms will develop which can be measured by
laboratory tests or clinical observation by the physician; but you do
not have to be at that stage before you are physically and mentally
unable to continue working. Subjective Symptoms alone may be disabling.
Subjective Symptoms are symptoms
that tend to be self-reported or observed by the physician and not
measurable by a lab test. The primary subjective symptoms experienced by
persons dealing with HCV can include:
Night sweats or fevers
Feeling very tired, fatigued, or lethargic
Joint and muscle pains
Nausea or poor appetite
A yellow discoloration of the skin and whites of the eyes, called jaundice
Abnormalities in urine or bowel movements
Some of these symptoms are “indirectly” documented
by certain readings on lab tests or as side effects of the medications
being prescribed; but, again, claim examiners usually do not have the
time or the training to make such connections unless spelled out in the
record. Those symptoms affecting you should be noted in the record
even if this is repeated every office visit.
Symptom Diaries are logs, usually
kept daily or weekly, that the patient maintains. If, for example,
fevers are a symptom, taking the temperature several times a day at
regular intervals and recording it can support that. Activities cut
short, canceled, or avoided due to fatigue can be entered as well as
pain with its location, frequency, and severity.
NOTE: Many with
HCV have been dealing with it for several years. When observing your
symptoms, do not compare them to yesterday or last month. Spend some
time remembering what your life was like well before infection. It was
probably a lot different than it was last month. Think of the things
you used to do without a thought that you would not consider attempting
now. Also, think back to all the accommodations you made due to your
condition: What short cuts or easier methods have you adopted to make
life easier for you? Any changes should not automatically be attributed
Clinical Observations are your
doctor’s (and nurse’s) observations while meeting with you. He or she
may observe symptoms or results of symptoms as well as how you appear.
In addition to looking for signs of fatigue or jaundice, the doctor may
also observe changes in your posture, gait as you walk, your mood,
attentiveness, and other factors that can help confirm some of your
subjective symptoms. These observations should be noted in the file.
Other medical conditions frequently
accompany HCV. Whether it is Fibromyalgia, Major Depression, or HIV,
they should be included in the medical records used to claim disability
whether from the same treating physician or another doctor.
Restrictions and Limitations are
the effects of your symptoms on your ability to function. Restrictions
are activities your doctor believes you should not do at all.
Limitations are activities you should do only with limits. The specific
restrictions and limitations should be noted along with itemized
justification for them.
Listing of Impairments, by the
Social Security Administration, is the best tool to use when applying
for Social Security Disability and can be helpful with private
disability plans as well. This booklet lists specific events,
diagnoses, and laboratory tests, which they believe are sufficient to
qualify for disability.
The listing for HCV is located under “Digestive Disorders – Chronic Liver Disease” which is found at http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05
. There is a long list of
conditions that will support disability. If you have any of those
conditions, they should be clearly noted in the medical record along
with any lab tests or supporting evidence. Also, note the various
explanations at the beginning of that chapter. They explain how Social
Security defines or measures the various conditions in the listing.
Talk to your doctor
Now you know what should be in your medical record to demonstrate
disability. How do you discuss this with your doctor(s)? Not all
physicians are going to welcome this discussion, and what is being
recommended here may be somewhat idealistic, but you won’t know how
successful this will be unless you try.
This is probably not going to be easy. Doctors do
not have a lot of extra time, and do not like to deal with insurance
companies. But, remember, it will benefit both you and your doctor in
the long run if everything is in the record and your doctor doesn’t
have to deal with repeated requests for more information later.
Remember a doctor is focused on treating you and
your condition, not preparing for disability so, in most cases, you
will be asking him or her to maintain your record differently than is
The next time you see your doctor, ask if you can
discuss your medical record and what is going into it. If a doctor
says there is no time, ask for a separate appointment or try to have
this discussion with the doctor’s lead nurse.
You may want to go to the appointment early and
ask if you can take a look at your medical record while waiting to see
the doctor. You may determine that the record is more complete than
might be expected or find areas you want to emphasize with the doctor.
During this discussion, there are several points you want to make:
While I am doing fine now, I realize that this condition may someday cause me to have to leave work and file for disability.
I have learned that neither private insurance
nor Social Security will accept your word without some documentation
and the best documentation is the complete medical record.
I believe that if we build a thorough medical
record now that includes more than office notes and laboratory results,
it will save both you and me time should we have to deal with
insurance companies and/or Social Security.
Would you highlight any objective symptoms you
find and any subjective symptoms you discover through clinical
observation? The insurance companies and/or Social Security may not
connect the lab result with the symptoms unless it is noted in the
record, and some of the subjective symptoms may have to be repeated
Would you list and explain the reason for any Restrictions and Limitations in my activities that you recommend?
If I bring you a Symptom Diary that I keep
between visits, would you see that it gets entered into my record each
time we meet?
While following these suggestions can make
transitioning to disability easier and less stressful, be aware that,
emotionally, such a close examination of your medical problems is not
pleasant. Be aware of that. Better to deal with it in small doses over a
period of time and avoid the frustration and stress of having to
appeal denied claims.
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