Celeste Cooper / Author, Health Pro, Advocate


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​Scroll to the bottom for an up-to-date video interview  with Disabiity 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.

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​

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See  PAIN ADVOCACY and SAMPLE ADVOCACY LETTER  for other helpful links.

Rule #7 - Don’t Give Up

The system is overloaded and many times people are turned down despite evidence they should qualify for benefits. Don't stop—file the appeal. The laws protect you somewhat because the ALJ should give more weight to the opinion of  your 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. 

We have a saying in the medical field, “if it isn’t documented, it wasn’t done.” This same rule applies here. At the time, it may not seem important, but later on down the road, when you have forgotten the details, it could be. Don’t give up on your doctor either. Help them understand what it is like for you. Their opinion of your health needs hold a great deal of weight with the Administrative Law Judge (ALJ).

Rule #6  - The Expert Witness

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. Many 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 chronic pain or how it affects you. If you have difficulty sticking to a schedule, or if you need time for doctor appointments or treatments, let them know.

Understand that you may, probably will, have to see a physician recommended by the SSA. Do NOT exaggerate your symptoms. Instead, be honest and hold nothing back, even if it is difficult for you. As human beings, we don’t like to talk about the things we can’t do, but this is a time to be brutally honest. Share everything, even your most intimate feelings about how your pain is affecting your relationships, your household income, and socialization.


Don’t assume any of your healthcare providers are writing everything into your medical record, not statements like “condition unchanged.” The SSA wants objective measurable criteria. They will want detailed medical records, and they will be looking specifically at “residual capacity” (your function with disability) and other things like your ability to speak English, your age, your education and your previous work experience.

Have you noticed a steady decline in the way you form words, or put a sentence together? Do you need assistance with daily cares, grocery shopping, putting on clothes? Do you need assistive devices? Have you shared these things with your healthcare provider? Don’t lose sight of how your life is affected because this is exactly what the SSA wants to know, and they won’t know it if you assume your care providers have figured it out.

Rule #5 - Don’t Assume Anything   

Having the experience of someone who specializes in disability law will help you establish if your medical condition and documentation meets the SSA rules for determining disability. When entering the appeals process, an attorney that specializes in chronic pain and invisible disorders is worth their weight in gold. They will schedule hearings, apply for back pay and many other things you would not have the knowledge to execute. And, if you have an attorney, you have a greater chance of winning on appeal. 

Rule #4 – The Right Attorney

The SSA will be looking at your functional capacity and other evidence as to why you are no longer able to work. It’s better to prepare your physician and yourself  for what the SSA might ask.

You cannot be working when you apply and processing disability applications can take a long time. Things consider 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 on your condition). Don’t waste precious time thinking you can do it. The application process is daunting, so you can imagine what an appeal would require. 

If you cut your work schedule from full-time to part-time or changed the type of work you do to accommodate your needs, have documentation ready. If you have had any tests done, keep a copy of the reports. Be sure to follow up with your physician and clarify that they documented your tests results and any recommendations in your medical record. Know your evidence, and be prepared to ask your physician to write a report. 

Rule #3 – Be Prepared 

Among other tools in chapter seven are:

  • Interaction Worksheet for 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

All of your symptoms and life modifications should be presented to your physician for your medical record. It is equally important to document any employer/employee interactions, conversations with representatives of organizations, (i.e. Workers Compensation, Long-term disability), or with the Social Security Administration. 

 Rule #2 - Write it Down

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 Social Security Administration’s Blue Book, “Listing of Impairments" Fibromyalgia (FM) is not in the "Listing of Impairments,” but there has been a ruling. . However, this does not mean one with MS, FM, or any other impairment, automatically qualifies for SSDI or SSI. The progression of disease and how it affects your ability to perform work is what makes you eligible for benefits.  

There are resources available, such as the Americans with Disabilities Act;  Equal Employment Opportunity, Undo Hardship;  The Equal Employment Opportunity Commission, Workers’ Compensation, COBRA, Private Disability Insurance, Employee Assistance Programs (EAPs), ERISA, FMLA, Vocational Rehabilitation, and Temporary Assistance Programs. But, few employers will jump over backwards to meet your needs when you can be replaced with someone who doesn't require the accommodations necessary to manage work and chronic illness. 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. 

 Rule #1 - Know What Programs are Available

 When Pain and Disability are Life Limiting. The Seven Rules

For various personal reasons, many people living with chronic pain and invisible illness try to remain in the workforce despite their dysfunction. Why shouldn't we want this? We are defined by what we do, and it is depressing when that part of our life is threatened. As functioning members of society, we want to be financially solvent and be respected among our peers, but that may not be possible despite our best efforts. Following are the “Seven Rules” for when pain and disability are life limiting, based on the information found in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: They Mind-Body Connection in the Chapter Seven, “Dealing with the System, Systematically.”

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Pain and Disability

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Celeste Cooper RN Author - Educator and Pain Advocate