Social security disability

by Frances Paulson Motley

Although most GIST patients choose to keep working and using their normal insurance or work-related health benefits for as long as possible, eventually progressive illness may make working impossible. At that point there are other options for disability-related income and medical cost coverage. In the USA one option is Social Security Disability.

GIST Support International posed questions about Social Security Administration disability income to Frances Paulson Motley, who is self-employed through her business, Liaison Services and Patient Advocacy, as a non-attorney representative and patient advocate. Frances began work as a grant funded research psychologist in 1973 in the oncology department of MCV. Politics as they were in the late 1970’s changed her focus into disability representation for cancer patients as grant funds went elsewhere. Gradually over the next four years, her practice expanded to include all types of disability applicants and patient advocacy. Currently the practice represents clients seeking Social Security Disability benefits, Medicare Early Discharge Hearings, Medicaid Hearings, and applications for name brand prescriptions under various pharmaceutical manufacturers’ Patient Assistance Programs. You may contact Frances at email address Her phone number is 757-599-1463.

1. What are the qualifications for SSA disability?

To be "Disabled" in terms of the Social Security Administration you must have documented evidence that you have a disease or condition that prevents you from doing your past relevant work (PRW) and that you are expected to be unable to do that work for at least 12 months, or that you are expected to die from your disease in the future, AND your skills from your PRW do not transfer into a job you could do.

2. Where can I read the basic requirements? 

Here is a link to the September 2008 edition of the "Blue Book" or Disability Evaluation Under Social Security, which was developed for physician guidance and use in disability matters:

It contains the most recently revised "Malignant Neoplastic Diseases listings" that became effective in September 2008.

In addition, there are new Compassionate Allowance categories and Quick Disability Determination criteria that may enable faster processing of claims.  See this link.  The most relevant Compassionate Allowance categories are:

  • liver cancer: Although most of the listing is about hepatocellular carcinoma, the listing also includes this sentence: "Secondary liver cancer is cancer that spreads to the liver from another part of the body."
  • small intestine cancer that is inoperable, unresectable, recurrent, or with distant metastases
  • large intestine cancer that is inoperable, unresectable, recurrent, or with distant metastases

3. Are there additional factors besides the basic rules that I need to know about?

It’s not the Rules so much as the exceptions to the Rules that matter. When you are diagnosed with a disease, such as GIST, and you require treatment and the combined effects of disease and treatment result in an inability to function at a level acceptable to employers, you are disabled. (SSR 96-8p). Generally, that means that you cannot work enough hours to be considered having "substantial gainful activity" (SGA), which today is about $814.00 per month GROSS, and more than 20 hours a week. If either of those two things is exceeded, you are not "Disabled" (that’s right, another exception…) UNLESS there is "special accommodation" by your employer, i.e. they let you take more breaks than anyone else, you can miss days from work and still get paid the same, you don’t have to really do anything to get paid, you are allowed to have more sick days than the company policy states…you get the idea. In addition, that special accommodation must be documented by your employer (in writing)!

There are SSR and AR, which are Rulings that apply because someone filed an Appeal all the way to the Supreme Court or the Appellate Court in their Federal Circuit and WON! The Social Security Administration then had to pass a Ruling to interpret the case finding and apply it to cases in that Circuit or all Circuits. The abbreviations SSR and AR stand for Social Security Rulings and Acquiescence Rulings, but to do an internet search for the most recent Rulings you use "SSR" and "AR."

Depending on your age and the group your fall into on the "Grid" (a table in the disability rules), you may also have to meet the standard of your past work not having any "transferable skills" to other work "in the national economy". The Grid evaluates your disability based in your education, your work experiences and your age. For example, if you are under 55 years of age, high school graduate, and you were a police officer for 15 years but you could no longer do police work due to severe fatigue, you could use those skills you got as a police officer as a dispatcher for a police department or a private security firm; therefore, you would not be disabled. You would need to prove that you could not even do a sedentary job such as dispatching. If you are 55 years of age or older, different Grid Rules would apply. Note that for applicants with more education (above grade 10) and who are below 55 years old, the exceptions created by case law and Rulings are more relevant than the Grid in determining disability.

4. When should I file my claim? Is there a limit on how long I can wait?

It is best to file your Claim the day you stop working at substantial gainful activity levels. If your company has allowed you to stay on in an advisory capacity but you don’t really do work, apply then! If your employer allows you to take more than the equivalent of two days per month off due to your treatment or your symptoms, apply the first month you missed two days. If you are working but you can do nothing other than to go to work, and you work out of "financial necessity" (this is a legal definition, not just so you can maintain the lifestyle you became accustomed to prior to your disability but rather, if you did not work, you could not pay for food or shelter.) then certain exceptions might apply that would allow your "onset date" to be earlier than your last date employed at SGA. Benefits can go back as far as twelve months from the month after the month in which you apply if you met the standard that far back. Example: you apply February 1, 2005 your benefits COULD go back as far as March 2004. Remember, Social Security claim representatives at 1 800 772 1213 will generally tell you the Rule, not the exception. DEMAND TO FILE A CLAIM when you feel you meet these standards after applying the exceptions to the Rule.

5. What medical records are needed to file a claim?

Your medical records as they exist in your doctors’ files are the only evidence SSA considers. Review your medical records to see what the doctors are writing and if they are writing different things than they are telling you, MAKE THEM FIX THEIR RECORDS. Social Security does not read letters or special reports by doctors when the information in those letters is not
also found in the contemporaneous medical records. Good medical documentation is far superior to poorly documented treatment and a supplement report! The contemporaneous records MUST document your SYMPTOMS, NOT JUST YOUR DISEASE.

As you can see, I remain employed at SGA although I am a GIST patient and have other MAJOR medical problems. My documented symptoms would not support a claim of disability.

Completion of a residual functional capacity (RFC) form will not help you if the records do not support in detail the RFC form by stating the symptoms relied upon by the doctor. Non-DDS requested RFC forms are routinely "disregarded" because the exact same doctor failed to write adequate office notes. DO NOT SUBMIT non-requested RFC forms. They are a sign of a weak case! Your medical records EACH VISIT should state your diagnosis, the reason for THIS visit, the presenting symptoms TODAY, your previously reported symptoms and their status, AND how those symptoms are affecting your life.

6. How do I start the claim process?

You may begin your Claim by filing online at The site walks you through it. BE CERTAIN NEVER TO PUT ANY PUNCTUATION IN THE DOCTORS’ ADDRESSES OR IT WILL "KICK OUT". List every medical, psychiatric, podiatric, chiropractic, hospital, physical therapy, etc. provider you have seen since symptoms began (SYMPTOMS).

The best way to start is to call 1-800-772 1213 and they will tell you where your local office or district office is located; the 800 number will send you forms and set an appointment for you at the local office. At the appointment you will need to bring various documents with you which will be itemized on the forms sent to you; you will need the names, addresses and phone number of all treating clinicians and hospitals where you have been treated or had a test done for every condition that you have — ALL OF THEM. You will be asked the first time you went to that medical provider, the last appointment date and the next appointment date; why you were seeing that provider and what treatment was rendered. Example: Dr Jonah Jones, Reason: diabetes mellitus; Treatment: blood testing, evaluation, prescription medications. If you are scheduled to see a new doctor, list all the information and put for treatment: "pending". Leave no blanks. Remember with every answer that Social Security is looking for the effect on your activities of daily living, not just your diagnosis.

You will be sent forms from the Disability Determination Services to fill out to provide them information about the activities of daily living (ADL). Remember this is the truly important information and should be answered with the greatest care. Do not tell them the most that you can do, tell them what you do on an average day. If you have good days and bad days, tell them that and describe a good day and describe a bad day and then TELL THEM HOW MANY GOOD DAYS YOU HAVE HAD IN THE LAST MONTH! If you can cut the grass, tell them how much longer it takes you now than it ever did before and how many breaks you take etc. If you wash the clothes, tell them how you have modified that task so you can do it. The more information you provide, the greater your chance of being approved. Smart remarks will lose the case every time! Note that ADL forms may not be needed if your doctors’ records are very good.

7. What are the stages of the claim process?

The stages of the claims process are: initial level, reconsideration level, and hearing level. By the American Bar Association analysis of Social Security statistics, 80% are denied at the initial and reconsideration levels; however, those who are represented have a greater than 80% rate of approval in a hearing before an Administrative Law Judge. If you are approved with the initial application, GREAT; if you are denied, file a Request for Reconsideration immediately. You will have 60 days but why delay?

A trial effort is being tested in various areas to decide if the Reconsideration level will be removed, but for now you will have a Reconsideration if you are initially denied. Usually this is processed more rapidly (45-60 days), versus the initial level, which usually takes 90-120 days from date of beginning the application or 60 days from completion of the ADL forms. If you are Approved, GREAT; if not, immediately file a Request for a Hearing by an Administrative Law Judge.

The hearing level is where things usually slow down but as a cancer patient, especially if you have metastatic sites, tell the local office WHEN YOU FIRST APPLY so they can give it a special status, a "Theiry Case" or a "Terry Case." (Theiry is correct but some use Terry.) Mrs. Theiry died before her case was heard and her family sued SSA for moving so slowly; therefore, now we cancer patients get special treatment when we need it most. With this faster pace, you will usually get a Hearing within 6-10 months from the Appeal date. The hearing is usually held less than 70 miles from your home, and travel can be paid in advance if it is farther away.

8. Is it advantageous to have a representative at a SSA Disability hearing or at an earlier stage in the claim process?

By statistics complied by the American Bar Association, 80% of the Claimants applying for Social Security Disability Insurance, are DENIED on initial application and about the same are denied at the Reconsideration level. However, of those represented at a Hearing before an Administrative Law Judge, more than 80% are APPROVED! Very few Claimants who are not represented are approved at any level!

There are no American Bar Association statistics on approval rates at the Initial and Reconsideration levels as a function of representation because few lawyers will take cases at an early level when their fees would be lower. If you have someone experienced in completing the disability forms, then the right information is sent to DDS, increasing your chances of Approval at the initial or Reconsideration levels. I like to begin at the beginning with clients. We get about 30% of claims approved at the Initial level and another 37% approved at the Reconsideration level. The sicker a claimant is, the more that person needs a representative to complete the forms and buffer the claimant from SSA and DDS.

9. What factors about the claim preparation increase the probability of getting approval in the first hearing?

Complete and accurate medical records are one factor, and the second and equally important factor is completing the forms accurately and in detail. When you get a letter telling you that you can review your file, go to the Office of Hearings and Appeal (OHA) and make a complete copy of the entire case file. Copying is free but they will not do it for you. You must call and schedule a time. Don’t be late, some one else is in line behind you for the copier and if it is my staff, I don’t care why you were late, it’s my client’s turn for my staff to copy now! I have NEVER been to an OHA whose staff was not very accommodating and very pleasant. Remember that and act accordingly. OHA does not work for the Social Security Administration, so if your local office personnel have been "hateful", leave it there! Read EVERY page of your file carefully. Check the dates of office notes against insurance EOB’s, any dates missing? Is the information correct? Are there any tests, doctors, psychiatry, hospital, or other providers’ records missing? Check the last date of the records in the case file; have you been to that provider since that date? Get missing records and updated records sent immediately to the OHA AND A COPY TO YOU. In this day of computers, records MUST come from the provider (or your representative) so that OHA knows that you have not changed any of the records.

The adequacy of preparation by your hearing representative is essential. At the Hearing, your representative (PLEASE GET ONE) will present a brief prepared that gives the var
ious SSR, AR, and case law citations that support a finding of disability. When you are interviewing a representative, this is a key question: Do you prepare a brief for the Hearing, if they say, "not usually", find some one else. I win over 80% of my cases and I write a brief for every one!

Your own responses at the hearing are another factor and must be consistent with your written statement on the forms. At the Hearing, the Judge has a form he must complete by asking you questions. REMEMBER it is YOUR ADLs that matter! This is NOT the time to be Father /husband of the year, or Mother/wife of the year. If you have not been able to clean your house for three months because of fatigue, say so!!!!!!!!!!!

"You only get one bite at the apple." If you don’t win at the first Hearing, get another Representative immediately so they can handle the Appeals Council (AC) Appeal rather than the representative who lost your first try. Also immediately file a new Claim. IMMEDIATELY!!!! It is a very difficult proposition to get a Reverse and Remand Order from the Appeals Council without a major error on someone’s part. If you were unrepresented, that’s too bad. Generally speaking, because claimants are informed in writing that they have the right to be Represented, the Judge will ask them why they do not have a representative and allow them a continuance to get a representative. So if they choose to proceed without a representative SSA says "too bad, so sad!" If you were poorly represented, you have a chance with some one who will clearly explain in a Brief to the AC what error was made. In almost twenty years of doing this, I have Appealed seven cases of my own to the AC and won Remands or Reversal Decisions in five cases. Each was an error of the ruling ALJ or evidence that was missing or in error in the Decision; I have filed four AC Appeals for other representatives’ cases and won each of those because of representative error or inadequate representation.

10. How can I find a qualified representative who can assist in my location? 

Some representatives practice in a local area or across several states, while others practice nationally (as I do). Many will only take a "travel case" if you pay their travel expenses up front! Teleconference hearings are possible and can work well, avoiding travel costs.

Ask your doctors if they can recommend someone. If the doctor had a patient who won their case, what representative did that patient use? I do not advertise. I feel that if I have to pay to tell people about what I do, I must not be doing that great a job! I get all my cases from provider referral and other client referrals and occasionally a Judge will send some one to me who came to a Hearing unrepresented and the Judge felt that they would be approved with the right representative. Actually, my office was located next door to IRS. If someone simply dropped in, I refused to represent them unless their medical provider would also refer them! I meet my clients each and every time they come to my office for anything. I complete all forms; they do not write anything but their names. I accept clients at the initial level, reconsideration level, but rarely when they are already waiting for a Hearing. A case is usually won or lost by case development and at the Hearing level does not provide adequate time. If I take a Hearing level case, I get an extension of time to better prepare the case.

If you meet a paralegal or and assistant, or if you call and your calls are rarely returned and never by the person who is representing you, you have contacted a "disability mill" and your chances of winning are very poor. Those guys usually meet you once for a few minutes after your Reconsideration has been denied, tell you who will be the assistant handling your case preparation, and you never meet the representative again until you get to the Hearing and see him/her reviewing your case file for the first time! I see attorneys coming in and asking "Are you Sally Jones. Are YOU Sally Jones, etc?" A Representative should know you well and know your case well enough to cite dates of service when your symptoms are substantiated.

You can also call the OHA and ask if they would recommend a particular representative. Sometimes they will tell you, and sometimes they will not. Word of mouth is the best. Next time you are in a doctor’s office, ask who is satisfied with their representative.

11. What is the fee structure for representatives?   Can I seek an advocate who will collect a fee only if I do win benefits?

All fees must be approved by Social Security. “Fee agreement cases” provide for the fee to be 25% of the back award to a maximum of $5300.00, whichever is LESS, and that is only when the fee is conditional upon a favorable decision. This is why many representatives will not take a case until it is at the Hearing level; they want the largest back award that you can get so they get the maximum fee. Our average fee is $2851.00 because we get a lot of cases approved without any fee (initial level) and at the reconsideration level when our fee is less than $2000.00. Many advocates will not charge expenses on a case. We do not. Expenses are not subject to SSA review or approval and range from $400.00-1000.00 per case so they can get away with a lot of "costs". Always require and itemized statement of expenses and ask for a running expense report (every few weeks/months ask for an itemized statement… check it the day before the Hearing)… you get the idea!

As to the amount of work involved in case, you have no idea how much time a case preparation takes. Generally, to prepare for a Hearing I set aside (for each case) at least 10 hours for the case file review, brief preparation, and client preparation. For an initial application, usually 2-3 hours are spent for the interview and form completion; reconsideration requires about the about the same time. Then each form (ALD, medical updates, pain report, fatigue report) is usually another 3-6 hours. Then there are the phone calls and emails, updates from clients (each calls at least once a month to update me if they have not had forms or come in for another reason ..staff send these to me as written messages). We estimate that each normal issue case takes about 86 hours from start to finish. Any problem cases can take three times that amount… but we win most of our cases. We usually know if a case is a "loser" when we take it and we tell the client that it is but for one reason or another we feel that it is in their best interest to continue with the case; for example, they are in remission and have returned to work when they file for the Hearing but since it takes a year or more, who knows what might happen so we follow through.

12. How is the disability award amount determined? Can it be retroactive to the time I stopped working?          

The Back Award is the money you should have received if you had been awarded your disability when you applied. Disability Benefits (DIB) are payable after six full months of disability. There is NO MONEY FOR THE FIRST SIX MONTHS!!! So if you win at the initial level and your date of onset (when you became disabled under SSA rules) was not 6 full months prior, you have to wait for benefits. There is SSI for those 6 months but SSI is resource-based (no 401K, no IRA, no savings over $3000.00 for married Claimants, no income from a spouse or child over a certain amount for the household, nothing of value that can be sold, no second home, no boat…etc.)

The formula is very complicated and I rely upon the SSA computer to tell me what the benefit amount would be. It is determined by the amount you paid into Social Security and the number of years paid in. Generally, it is determined by the five consecutive highest earning years or the earnings for the last full year
worked, whichever provides for the highest benefit.