May Awareness Event for Fibromyalgia and Other Invisible Illnesses-An Interview with a Disability Attorney by Celeste Cooper

Each year in May I make an effort to do at least one interview to raise awareness for fibromyalgia and other invisible illness. This year I am the interviewer. I picked this topic for two reasons:

1. I frequently see patient comments regarding denial of application for disability benefits.
2. Anthony Castelli, Esq., attorney in Cincinnati, Ohio, was willing to give the interview to help patients understand the process.

 

Anthony Castelli
Attorney at Law

 

Disability and Invisible Illness: An Interview with 

Attorney Anthony Castelli

If you or a family member or friend has significant symptoms or disease that interferes with their ability to work, this is an hour you don’t want to miss.

Attorney Anthony Castelli has more than thirty years experience with:

• Social Security Disability
• Personal Injury
• Worker’s Compensation
• Wrongful Death

We discuss:

• The difference between SSI and SSDI
• Long-Term Disability Insurance and SSA disability
• When to apply
• How to apply
• Turned down, now what? The Appeal Process
• The benefits of having a disability attorney
• How the attorney is paid
• Primary doctor vs. Expert Witness
• Engaging the primary doctor to write a report
• The most important thing to remember
• Resources

You can find the interview by following this link:

https://youtu.be/d7seNJnEoVE

*Disclaimer: The time delay on my end is due to my internet connection being from a phone hotspot. I apologize for any inconvenience.

You can find more information:

• AnthonyCastelli’s website, Social Security Disability Cincinnati 
• Celeste's website on the page “Pain and Disability”
• Also see the Social Security Administration site. http://SSA.gov

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"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate—Sharecare Fibromyalgia Health Expert

NEW Website: http://CelesteCooper.com

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical or legal advice.  

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Social Security Disability: Mastering the Red Tape When You have Invisible Illness

Scales of Justice

SSDI and Their Expert Witness

Make sure you doctor is documenting what you say in your medical record. Don't assume anything.

What the SSA wants to see is how illness affects your ability to function and with objective measurable criteria.

• What is your cognitive-neuro score? This is a grueling all day tests that measures your cognitive deficit and is administered by a credentialed forensic specialist psychologist.
• How does altered sleep interfere with your ability to copy with everyday things?
• How long does it take you to prepare for work?
• What is your life like at work?
• Is your work willing to make accommodations?
• Have you had to make adjustments to your work schedule in order to cope with the pain and fatigue?
• What is your work record like, are you unable to make it many days, and if so, why?

Excerpt from Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain. Read more here.

The ALJ may request expert testimony from medical and vocational experts. These “experts” may or may not have firsthand knowledge of [FM, CFID, myofascial pain, systemic Lupus, RSD/CRPS, Lyme’s disease, GWS, or other invisible illness.]  In my experience, finding a doctor who is aware of these conditions was difficult, so you can well imagine the knowledge base of the ALJ’s “expert witness.” The laws protect the claimant to some extent in that the ALJ must give more weight to the opinion of the claimant’s treating doctor than to the opinion resulting from a one-time medical exam requested by SSA or their team. 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 the claimant’s medical record. This is why it is so important to make sure your medical records reflect the continuing disabling effect of chronic pain.

WINNING A SSDI APPEAL

Getting Turned Down—What Next? Book excerpt  from “Approaching the System Systematically”

Your denial letter will most likely suggest you do some specific type of simple, sedentary work. The SSA gets their suggestions from the Dictionary of Occupational Titles and their suggestion may have little or no relevance to your claim. If you disagree with the decision, you can request a review, called an “appeal.” There are certain guidelines for filing the appeal, so be sure to verify information with the Social Security Administration.

Here  is a link you might find helpful. http://www.ssa.gov/pubs/EN-05-10041.pdf

IF YOU ARE IN APPEAL, you need a good attorney. I hear over and over again from people who lose at this stage, they are not happy with their legal representation. Your attorney needs to understand what your illness is, the repercussions, other issues, and how they all come together to affect your ability to function. Educate them.

How do you make it through a day? How many hours to you have to care for the unpredictability of it all. Day by day, moment by moment we are held hostage by our symptoms.

Explain this in a daily diary; buy a calendar at the $1 store and document symptoms, treatments, medications, and whether or not they work. Photo it and get it into your medical record and give a copy to your attorney. Let them see, make them see, what it is to walk a day in your shoes.

Even though you may have a SSA qualified illness, your application for SSDI benefits can turned down. They based their decision not on your diagnosis but on your ability to function, or more sadly, the lack of documentation.

If you have brainfog, get that neurocognitive exam.

My doctors saw me holding on to work by my fingernails. I did not go down easily. I cut my hours, changed gears, until I had to face the grim reality. The majority of us have stumbled down this road, quite literally. The SSA does take stock in what your personal doctors have to say. Make sure they say it.

If you lose at this level, don't give up! Remember, get your documentation in order, and consider hiring another attorney if yours is unfamiliar with our illnesses. Most work on commission and their fee is capped.

There is an entire section in the book devoted to SSA filing, documentation, what to expect, etc. The book has many documentation tools throughout to help you explain your condition and needs, painting a picture for your physician to help in his assessment. Using the forms will also get the information in your medical record. Make sure you physician puts the help sheets in your record where it belongs. It will help him/her save time and validate to the powers that be, why the treatments and medications are given, etc., and explain what it is like to be in your body.

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

 Final Tips:

• Always be truthful
• Document everything, even your conversations with SSA (you won't remember, but they will)
• Explain what it is like on your worst day (I recommend having someone help you fill out the paper work during these periods, as most likely you will not be able to. It is human to dismiss how bad things are on a bad day when you are having a good one. This is what your life is like, explain it in no uncertain terms, it is difficult for those who do not experience our pain and fatigue to know what it is like).

Other links you might find helpful:

From my website - When pain and disability is life limiting. The Seven Rules, here.

https://thesethree.com/Pain___Disability.html#.UhDfDJKOAtg

Social Security Application

http://www.socialsecurity.gov/applyfordisability/

SSA Listing of Impairments (Blue Book)

http://www.ssa.gov/disability/professionals/bluebook/listing-impairments.htm

SSA Listing of Impairments Part A

http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

SSA Listing of Impairments Part B (Childhood)

http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm

Fibromyalgia Residual Function Questionnaire

http://www.docstoc.com/docs/16448838/Fibromyalgia-Residual-Functional-Capacity-Questionnaire-_without

You can find the book at all major retailers. There is a synopsis on the book and links for purchase.  though it was written with specific patients in mind, 80% of the material can apply to anyone living with invisible illness.  In healing and hope, Celeste

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

When pain and disability is life limiting. The Seven Rules

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