December 3
was International Day of Persons with Disabilities, which is recognized by the
UN, so it is only fitting that we talk about how disability affects our lives.
Many people with chronic pain and
invisible illness try to remain in the workforce in spite of their dysfunction
for various personal reasons. What statistics do not show is how many of us are
aware of and access available resources.
We are
defined by what we do and it is depressing when that part of our life is
threatened, we want to be financially solvent.
Many of us cling on to our jobs by our fingertips successfully, but we
need help. In chapter seven “Approaching the System Systematically” we discuss
the programs available to assist us.
- The Americans with Disabilities
Act (ADA)
- Five Areas of the ADA
- The ADA General Rule—Statute 42
U.S.C. §12112(a) Qualified Individual,
Essential Function, Reasonable Accomodation
- United States Department of Labor
(USDOL)—Equal Employment Opportunity, Undo
Hardship
- The Equal Employment Opportunity Commission (EEOC)
- Patient Rights
- Miscellaneous Programs and Help, such as Workers’ Compensation, COBRA, Private
Disability Insurance, Employee Assistance Programs (EAPs), ERISA, FMLA, Vocational
Rehabilitation, and Temporary Assistance Programs
- Confidentiality and HIPAA
(Cooper and Miller, 2010)
Rule #1 - Know what programs are
available.
The fact
remains however, few employers will jump over backwards to meet your needs when
there is a healthy person who doesn’t require all the baggage that goes with a
chronic illness. We go into great detail in the book (Cooper and Miller, 2010)
as to how these programs work and don’t work for people with disability.
The alternative – applying for SSA
benefits
Programs such
as Social Security Disability Insurance (SSDI), for people with a work history,
and Supplemental Security Income (SSI), for the disabled without a work
history, are available, but it isn’t as simple as that. The process has many rules (see links
provided below).
So what happens when you fall off
your own fiscal cliff?
It
is imperative that you have a paper trail (medical record) that documents
specifics on your ability to function. For instance, multiple sclerosis is in
the "Listing of Impairments" (Soc Sec Blue Book) and now fibromyalgia
is too, however, that does not mean one with MS or FMS automatically qualifies
for SSDI or SSI. The progression of the disease and how it affects you
personally and your ability to perform work (SSDI) is what makes you eligible
for benefits.
Rule #2 - If
it isn’t in your medical record, it’s not so.
All of your
symptoms and life modifications should be presented to your physician for your
medical record. Doctors are very busy and one that supports you should be glad
to have any of the various recording tools we present in our book. (Cooper and
Miller 2010) This information will also be
helpful if you need to appeal, most initial applications are turned down. See chapter
seven for: WINNING A SSDI APPEAL - Getting Turned Down—What Next?
Among other
tools in chapter seven are:
Interaction
Worksheet for Important Calls and Meetings [with the SSA]
Table for Determining Disability Status for Those Limited to
Sedentary Work
Table for Determining Disability Status for Those Capable of Light
Physical Work
Rule #3 -
Provide evidence of how your symptoms obstruct your daily living, and what
alterations you have made to survive. Get your documentation into your medical
records.
MOST
IMPORTANT! When entering the appeals process, hire an attorney that specializes
in chronic pain and invisible disorders, it can make all the difference in the
world.
Rule #4 - Hire
an appeal attorney that is familiar with chronic pain and invisible illness.
Applying
and going through the process of SSDI can cause great financial burden on our
household. Things to be considered are loss of income, the stress of the
process in general, and the cost COBRA insurance (which you should make every
effort to keep because you will need continued documentation that your disorder
is not improving while going through appeal.)
Chapter
Seven, "Approaching the System Systematically” has all the information on
what Social Security requires to make a determination. Fill out the
questionnaires at the end of each chapter, keep track of all the tests
and doctors and the results on the various forms provided. Have your primary
doctor give you their narrative report; you will have your ducks in a row. Our
publisher has given permission to copy these documentation tools for your
personal use.
- •
Medication Log
- •
Symptom Inventory Survey
- •
Anatomical Diagram of Pain
- •
Health History Log
- ·
Treating Health Care Provider Log
- ·
Chronological Health Record
(Cooper and Miller, 2010)
Clarifying assumptions
I was shocked
when I got a copy of my medical record from one of my specialists of 25 years. Unbeknownst to me, he consistently documented
no changes in my medical record. I copied the “Residual Functional Capacity
Assessment” (below) and reviewed it with him. He filled it out signed it and put it in
my medical record. He knew all the
things they were asking, but many times physicians are not savvy, instead they
run the other way when asked for their input.
Reviewing your functional status is not only good for your medical
record; it should be a periodic review for your physician, so he/she
understands how pain and illness affects you.
This is an easy tool to help everyone involved.
Rule
#5 - Don’t assume anything. Making the
information available to your physician should be welcome and it helps you
track your successes and failures too.
Functional Impairment
The Social
Security Administration's (SSA) wants to see how illness affects your ability
to function and they want objective measurable criteria.
Have you
noticed a steady decline in the way you form words, transpose numbers, letters
and words or have difficulty putting an intelligent sentence together? It can be frustrating and life altering. The
work that once took us an hour now takes us all day, possibly days and needs to
be broken down in small manageable increments.
If you notice you consistently have to set a timer to remind yourself of
something in 3 minutes, or leave items out as triggers to your brain to
complete a simple task you used to take for granted, be sure you bring this
up. A neurocognitive exam is in
order. The exam will document attention,
memory, recall, response to repetitive behavior, and how the results relate to
others of your age, experience, and education. It should be administered by a forensic
neuropsychologist. A forensic neuropsychologist is known by the court and they
have tremendous credibility. It will be
bitter sweet, seeing the results in black and white validates your decline, but
it is also reassuring to know you are not off your rocker.
Rule #6 - Brainfog? Get a
neurocognitive exam.
- What is your
cognitive-neuro score?
- Does altered
sleep interfere with your ability to cope, if so, how?
- How long does
it take you to prepare simple tasks?
- Do you have
to have medical equipment to carry on each day?
- Are there
days when you can’t drive and why?
- Are you able
to lift, carry, stand, use your arms for long periods, if not, why?
- Are your
symptoms affecting your relationships and how?
- Do you have
other conditions that affect your pain and function?
- What
adjustments have you made to accommodate your personal needs?
These are an
example of what the SSA is looking for, there are more in the book, but the
idea is to get you thinking about how your illness and pain are affecting you. Write
down each thing as you notice it. We
evolve into this new person because we must, don’t lose sight of how your life
is affected. I mostly talk about how to
cope, and say putting such focus on these things is unhealthy, but this is the
time you must focus. As I said before,
the process is itself is difficult.
SSDI
and Their Expert Witness
The SSAs own
doctors said I should not do anything that requires repetitive long term motion
of my upper extremities and hands, (boy do I ever know that) and that I should
not stand or sit for prolonged periods. This was THEIR doctor. Yet in my denial
letter they suggested I get a job as a "doll maker." Obviously the
system is overloaded. Don't stop, file an appeal.
Rule #7 - Don’t
give up.
The Administrative
Law Judge (ALJ) may ask for expert testimony from an independent source. Most
of these experts do not have direct experience with invisible illnesses. Most
of us go months or years without a diagnosis and have difficulty finding THE
doctor that knows how to diagnose our condition, so you can imagine what the
ALJ’s “expert witness” knows about how our illnesses affect our lives, let
alone our ability to stick to the regimented schedule of work duties. The laws protect us somewhat because the ALJ should
give more weight to the opinion of the claimant’s treating doctor than to the
opinion of one of their doctors. However, the judge’s expert witnesses have
more impact on the ALJ’s decision when the claimant’s physician has not
adequately addressed and documented key issues in your medical record.
"When
defeat comes, accept it as a signal that your plans are not sound, rebuild
those plans, and set sail once more toward your coveted goal."
--Napoleon
Hill
Paying
it forward, in pain, for pain, Celeste, RN, author, pain patient/activist,
educator, and fibromyalgia health expert. http://TheseThree.com
All blogs, posts and answers are not
meant to replace medical advice.
Cooper, C and
Miller, J. Integrative Therapies for Fibromyalgia,Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection.
Vermont: Healing Arts Press. 2010.
Helpful
Links:
ADA
http://www.ada.org/
EEOC
http://www.eeoc.gov/
SSA - Your
Ticket To Work
http://www.socialsecurity.gov/pubs/10061.html
Social
Security Application
http://www.socialsecurity.gov/applyfordisability/
Social
Security Blue Book
Listing of
Impairments - Adult Listings (Part A)
http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm
Listing Of
Impairments - Childhood Listings (Part B)
http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm
The SSA Physical Residual Functional Capacity Assessment
https://secure.ssa.gov/apps10/poms/images/SSA4/G-SSA-4734-U8-1.pdf
Fibromyalgia
Residual Function Questionnaire
http://www.docstoc.com/docs/16448838/Fibromyalgia-Residual-Functional-Capacity-Questionnaire-_without
Many people with chronic pain and
invisible illness try to remain in the workforce in spite of their dysfunction
for various personal reasons. What statistics do not show is how many of us are
aware of and access available resources. 
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