Mistakenly many Americans think that Social Security only offers retirement benefits for senior citizens age 62 or older.  Nothing could be further from the truth.  Social Security also provides disability insurance (SSDI), Supplemental Security Income (SSI), survivor benefits and helps with the Medicare program.  I must admit that I myself, was unaware of all that the Social Security program provides for the American people.  Social Security Disability (SSDI), is an insurance plan administered by the Federal Government that is paid for by FICA Tax deductions out of American's hard earned paychecks.  Most Americans know nothing about this insurance unless they need to apply for this benefit themselves.  It was created to be a safety net for millions of disabled Americans, and for many it has become their only lifeline for survival.  There is a huge shameful scandal involving this program, that most Americans know nothing about unless they need to apply for this benefit themselves, and the misconduct and neglect, that our government has perpetrated against the weakest citizens of this nation is an atrocity!  Due to current program problems applying for this benefit often exacerbates/creates new health issues, and many lose all their financial resources, their homes, even their lives while waiting for help.  If you don’t suffer from depression before applying for benefits, chances are you will, in fact many contemplate or attempt suicide.  It seems that this program is currently structured to be very complicated, confusing, and with as many obstacles as possible, to discourage claimants, sucking the life out of them, hoping they “give up or die” trying to get their benefits.  That is how the government keeps your money from you, in order to use it for “pork barrel” spending, catering to special interest groups, investment in other countries, making bombs or starting wars.  In our country you’re required to have auto insurance in order to drive a car, you pay for health insurance, life insurance etc.  If you filed a claim against any of these policies, after making your payments, and the company tried to deny you coverage when you had a legitimate claim, you would be doing whatever it took, even suing, to make them honor your policy.  Yet the government is denying Americans their right to legitimate SSDI benefits everyday, and you should be outraged!

Until 1996 I was perfectly healthy and never expected to have to use these funds until I was old enough to retire.  Unfortunately in November of 1996 I hit my head on the doorframe of my car as I was exiting the vehicle, and within a week a huge lump called a hematoma (blood clot) formed on the back of my head between my scalp and skull.  I endured months of excruciating pain and eventually lapsed into a coma.  The result is an incredible story of medical incompetence, which resulted in major brain surgery on 1/14/97.  Since my brain surgery in 1997, I take an aspirin a day and pray as my only treatment for this huge clot in my brain.  I also now suffer from several incurable autoimmune disorders including: Scleroderma, Raynaud’s Disease, Rheumatoid Arthritis, Fibromyalgia, Calcinosis, Sjogren’s, Telangiectasias, Hashimoto’s Thyroiditis,  which it is believed were caused from my autoimmune system working so hard to fight the brain infections, that it never turned off, and is now is attacking all the other parts of my body. 

“Autoimmune diseases are among the top ten killers in the developed world.”
Cause Of MS And Diabetes - Pretoria News - 3/12/01

I was hospitalized again in the Spring of 2001, from what I thought was a heart attack, but was ruled to be a result of my autoimmune system attacking my esophagus, causing severe pain and esophageal reflux disease. Scleroderma is a collagen disease, which in its extreme form hardens tissues and vital organs throughout the body and eventually kills you. The worsening Rheumatoid Arthritis causes fatigue and lots of pain in the joints throughout the whole body, and Fibromyalgia causes major fatigue and pain in the muscle tissues and nervous system.  The Calcinosis has caused very painful stone like calcium deposits to form on my joints and fingers.  As my Raynaud’s disease worsens each year I face the real possibility of hand/arm – foot/leg amputations, and damage to my internal organs as well, and I suffer from very painful ulcerations all over my fingers, which I endure for weeks at a time until they heal, only to recur again later.  The only medicine I can take to try and reduce the symptoms does not help much at all.  In July 2004 I had surgery to remove stage one melanoma skin cancer and I am hoping that it was caught in time.  I have severe neck, spine and back pain, numbness, tingling and pain in my arms, hands and feet, Osteopenia of the hips, Osteophytes in my right knee, and Plantar Fasciitis in my left foot which makes it painful to stand or walk.  I have severe headaches and nosebleeds, irritable bowels, memory loss, inability to sleep or concentrate, anxiety and situational depression as the result of all my health problems and worsening financial situation.  I am very anemic to the point where I needed IV iron infusions, but they made my irritable bowel symptoms worse, so now there is nothing I can take to stop the anemia.  I was just diagnosed in 2007, with having an En Plaque Meningioma (brain tumor along the tip of right temporal lobe) growing on the surface of my brain, behind my right eye.  Due to my medical history, shape and location of the tumor, any further treatment is not feasible at this time, so my brain surgeon is going to monitor it with regular MRI’s for now. I also discovered that I have Celiac disease – allergies to Gluten/Gliadin, wheat, rye, oats, barley, malt, maltodextrin, whey, wheat starch, modified food starch, bran, orally ingested grain alcohol, and  Diverticulosis so I must also avoid all nuts, kernels, seeds etc.  I must read all labels on any food that I purchase/eat and any medicines that I take. and anything that I can eat/take now is often very expensive.  It has made an already severely compromised lifestyle even more unbearable.  Since my body is under so much stress I have frequent very painful Shingles attacks.  In addition I have way too many more health issues to list here, which fill 2 pages of 8x10” paper single spaced. Since there is no cure for these diseases, I just live each day as if it will be my last, making the most of every second that I have.  My medical horror story can be found on my website:
"A Bump On the Head"

I did my best to function in spite of my fate but the diseases progressed to a point where I am permanently disabled, can no earn an income, and every day life causes me intense pain beyond description among other things.  In December of 2001, I applied for Social Security Disability which I assumed would be there to help me in my time of need.  For 30 years of my life I contributed to the Social Security system like millions of people do every day, but I was very unaware of the problems with this program, until my first experience with the SSA.  It’s common knowledge on the streets and in legal circles that it is RARE if anyone gets accepted the first time they apply, and as mentioned before, the system is set up to discourage claimants, even those who feel brave enough to tackle the system.  In spite of all the discouraging stories I heard from others, I figured every case was different, and anyone with the laundry list of illnesses that I had, and the documentation to prove it, that surely  I would be able to get the help that I needed.  I was sorely mistaken and my experience with the Social Security Administration, trying to get my SSDI benefits was not a pleasant one by any means.  The following is what I have discovered in the process.

States Of Denial

If you should suddenly become disabled and have to file for Social Security Disability benefits, you may want to consider moving before filing your application.  Since Social Security is widely known as a Federal program, where you live should not affect your ability to obtain benefits. Sadly this is not the case.  What most don’t realize is that after you file your initial disability claim at your local Social Security Office or online, that information goes to DDS/Disability Determination Services facility in the state where you live to be processed.  There, the most crucial part of your disability claim, the medical portion, is reviewed by a caseworker/adjudicator and medical doctor on their staff who never sees you, and in most cases never even communicates with you at all.  Then they decide whether or not they feel you are disabled based on the information that you and your doctors have provided.  What would be an incentive for states to deny Federal claims?  Since many Social Security Disability claims are SSI or both SSI/SSDI combined claims and many states offer to supplement SSI payments at a higher benefit amount, therefore they want to keep as many off the rolls as possible so they do not have to pay out this supplement.  Thus the explanation for the fluctuation in denial/approval/backlog rates by state.  Unfortunately there’s very little if any oversight, on these state offices to ensure they are making the proper decisions on disability claims.  I personally have caught them in fraud, negligence, and major security breaches in the processing not only of my case but other cases as well.  That’s why so many claimants appeal to the hearing level, where a huge percentage of bad state decisions are overturned and cases are finally approved.  If better decisions were made at the initial stage there’d be no need for hearings in the first place, yet it seems this fact has been greatly ignored.  For the future, the most ideal customer service scenario would be to have ALL phases of the disability claims process be handled directly out of the SSA field offices.  Since SSDI/SSI are Federal benefits why has a State DDS level been added to this process at all?  One must question why this common sense solution has not been instituted.  SSA, Congress and the GAO must look into reforming this program in such a way that ALL who handle benefit claims are Federal employees and consolidate ALL phases of the SSDI/SSI process into the individual SSA field offices throughout the nation. 

The Stigma That SSDI Claimants Encounter

SSDI claimants were once hard working, tax paying citizens with hopes and “American dreams” but due to an unfortunate accident or illness, have become disabled to a point where they can no longer work.  SSDI is not welfare, a hand out, reward, golden parachute or jackpot by any means, and most people would be hard pressed to survive on it.  Yet, often claimants are treated like criminals – viewed as frauds trying to scam the system, and that the SSA must “weed out” them out by making it as hard as possible to get benefits.  Yes, I’m well aware as I write this, that there’s some who’ve abused the system and that’s a shame, because it casts a bad light on those who really need this help.  The percentage of claims that in fact, aren’t legitimate is very miniscule and there are methods in place to “filter them out”, without causing harm to legitimate claimants.  In 2007, the average monthly Social Security Disability Insurance (SSDI) benefit was only $979 (Social Security Administration, Fact Sheet 2007).  Nobody in their right mind would want to go through this process, and end up living in poverty on top of their illnesses, if they could in fact work.  They would much rather have their health back and the jobs they once had before their lives were changed by their illnesses or accidents.

After filling out several pages of paperwork which I was told was greatly reduced from which it had originally been, and submitting a huge stack of medical records supporting my claim, I was told it would take 4-6 months to go through the process.  I was shocked and asked what I was supposed to live on, and I was told to apply for Social Services (Medicaid, food stamps and cash assistance) while my claim was being reviewed.  I did just that, and was denied any sort of help based on the cash value of a life insurance policy that is not even enough to bury me when I die.  Due to all my illnesses if I cashed in that policy I would never be able to get insurance again!  That process and paperwork was very difficult and humiliating and then to be denied that help too, just added even more to my stress and misery. 

Social Security Disability Program Problems - Contributing Burden Factor on Medicaid/Social Service Programs For States

Many SSDI claimants are forced into poverty while waiting for their claims to be processed (many years in some cases), and then must file for state funded help such as cash assistance, food stamps, Medicaid and other Social Service programs, in order to survive.  Now they must endure another horrendous, very stressful and demeaning process, to say the least, after they have already lost everything due to the problems with the Social Security Disability program, including the huge claims processing backlog.  For example in New York State, about half the 38,000 people now waiting on disability appeals, for an average of 21 months, are receiving cash assistance from the state (New York Times 12/10/07).  This problem could be greatly reduced once this Federal program is fixed, and the states would then reap the benefits in the long run.  State politicians need to put pressure on Congress to put more funds into the SS system to hire more qualified claim examiners, and to better educate their employees, doctors, also the claimants themselves, to speed up the process.  Claimants who file for Social Service programs while waiting to get SSDI benefits, in many states have to pay back the state out of their meager SSDI benefits once approved, which in most cases keeps them below the poverty level and forces them to continue to use state funded services.  They are almost never able to better themselves, and now for the rest of their lives will have to rely on two funded programs instead of just one.  If a healthy person files for Social Service programs and then gets a job, they do not have to reimburse the state once they find a job, for the funds they were given while looking for work - why are disabled people being discriminated against?  In all states there should be immediate approval for Social Services aid (food stamps, cash assistance, medical assistance, etc) for SSDI claimants that does not have to be paid back out of their SSDI benefits once approved.  The practice of pay back to the states for aid while waiting for SSDI benefits is blatant discrimination against the disabled, and needs to be eliminated immediately. 

I was hoping beyond hope that I would soon get the news that my SSDI claim was approved, but instead on 4/25/02, I got the incredible news that my claim had been denied! I’d heard too many horror stories in doctor’s waiting rooms and other places I’d been, of people who had lost everything, were in homeless shelters, totally bankrupt, had no health insurance and still had to deal with the stress of all their illnesses.  I knew first hand what they meant now, since at this point, I was almost there myself.  I didn’t understand how it was possible that anyone could read about all the medical problems I have, and it not be totally transparent that I should qualify for benefits, and that I never should’ve been denied in the first place!  I immediately filed for an appeal, had to go through an even more complicated process and was told it would be at least August of 2003 before I got my hearing if I didn’t die first!

A dire needs case in the eyes of the Social Security System means that you have to prove in writing, that you are going to have your home foreclosed on, be evicted from your apartment or have your utilities shut off.  Nobody should ever have to deal with that sort of thing when they are sick.! Most are not able to afford health insurance, medicine, food, other necessities of life, and have to wipe out their financial resources because of their inability to work, but yet that is not even considered a dire need!  Something is seriously wrong with that picture.  Remember, there is no cure for any of the illnesses I have, and all the diseases are getting worse by their clinical nature with each day that goes by, due to the ever increasing stressful conditions I have had to live under – and yet that was not considered a dire need in my case.  The clot in my brain and my worsening financial situation continue to keep me from taking the medicines and seeing doctors that could help me deal with this horrible existence.  As far as I could tell at the time, worsening health problems doesn’t seem to be a factor in speeding up SSDI claims, since as mentioned earlier, there are several reported cases of people who have died while waiting to get their benefits.

When I called the Office of Hearings and Appeals in Buffalo NY to check on my claim on 9/13/02, the receptionist told me, that my file was still in the un-worked status, which meant that nobody was assigned to my claim yet, or even looked at the file at all since March, when I originally filed my appeal.  I expressed my disgust that after six months in their possession that it had not even been touched yet!  I called them again on 1/23/03 and they told me that STILL nobody had been assigned to my case and it would be a MINIMUM of five months more or even longer since they were just starting to work on cases that were filed in November of 2001!  This is outrageous when something this serious, and a matter of life and death, could be handled in such a poor manner.  No other company or other government organization that I know of operates with such horrible turn around times.  If any other corporation in this country did business like this, the majority of employees would be fired on the spot, and the company would be shut down within a year, yet these problems have been growing worse for decades.  The receptionist expressed her sympathy for my cause and literally begged me to let others know (especially the government and press) about how much of a problem they are having.  Imagine my surprise when I was calling them for help and they were begging me – a disabled person, to get them help!  I was told that there are only 50 employees handling hundreds of thousands of cases and they, along with all of us claimants critically need help now! After my conversation with the Buffalo office I did just that.  

Overwhelming Bi-Partisan Apathy

I contacted several national media outlets (TV, radio, print) who showed no interest in the problem, even though this issue affects millions of people all across the country.  I wrote to ALL my state, Congressional elected officials, including the attorney general, the Governor, the President, Vice President, and various other members of Congress.  As a registered voter, I was very disappointed, disillusioned, and disgusted that those whom I have supported at the polls every year, when I asked for help in my own particular case, the very few who responded at all, said that I needed to be become homeless or have my utilities shut off before they could help me, and there was nothing else they could do to expedite my claim.  This is appalling and totally unacceptable to me, that never once, did they say that they would do anything to try and correct the flaws in the system that cause the horrors we face.  This is bi-partisan apathy at its finest!  Congressional offices as part of their functions, contact Social Security on behalf their constituents going through the SSDI process all the time, so our elected officials are fully aware of all the problems, and they are the ones who can help correct them.  Yet, the government which continually tells the rest of the world how to live, obviously does not care, that millions of us are suffering and dying here at home.  I find it incredulous that they have done virtually nothing to initiate reform of the system that is wreaking havoc on the disabled citizens of this nation.  While the majority of Americans were shocked at the reaction of the Federal government in the aftermath of hurricane Katrina, I wasn’t surprised at all to see people dying in the streets.  I shudder to think of how many more lives will be further ruined or lost, when the mentally and physically disabled victims of Katrina, other natural disasters, 9/11 victims who survived that day, but are now disabled and facing a similar fate, Veterans and the millions of other disabled Americans, encounter their next experience with the Federal government as they apply for their SSDI/SSI benefits.  Little or nothing is heard about the service men and women who are injured and have to go through this nightmare to get their SSDI benefits, in addition to their struggles with the VA.  Horrible treatment for those who give of their lives to protect our country.  We are all being abused at the hands of our government, and to date our cries for help have continually been ignored.  This apathetic attitude of our elected officials is not only unacceptable, but it is criminally negligent, behavior, and they need to be held responsible for it.  We elected them, trusting that they would protect, serve us and be there in our time of need, but sad to say they have failed miserably at their jobs, doing us a grave injustice in this area.  It’s time that they speak out about the crimes being committed against their constituents, and create the legislation needed to correct decades of abuse and corruption of this Federal program.  Keep in mind a country is only as strong as the citizens that live there, yet the current Social Security Disability program preys on the weak, and decimates the disabled population even further.  This important issue needs to be addressed now, and only our elected officials with your urging can get the funding and create the legislation needed to fix this critical problem.  A personal goal of mine is to one day speak before Congress, to raise the awareness of this crisis.  Time is of the utmost importance in this matter, as millions of SS Disability applicants, even as I write this are suffering and losing everything, including their lives, while trying to get their benefits. 

I called the hearings and appeals office again in March 2003 and they said it would be at least August 2003 before someone would look at my case.  I then did some research and found out that I could request copies of the reports of the SSD IME doctor I was sent to, and the notes of the original DDS claim examiner that denied me, and when I received them, my worst allegations were then confirmed.  Even though I have no real neurological problems they sent me to a neurologist to examine me, so of course he would find nothing wrong with me and say that I did not qualify as disabled.  I should have instead, been sent to a Rheumatologist since most of my problems are caused by the autoimmune disorders.  Even though I filed my disability claim based on all the physical problems I have, as a PRIMARY diagnosis for disability, the DDS examiner purposely wrote depression as a primary diagnosis instead of a secondary one, so of course I would be denied based on that as well.  This was after I had already submitted tons of documents to prove my PHYSICAL disability – reports/documents that he chose to ignore. 

I then contacted the Social Security Office of Public Inquiries, which told me to contact my elected officials, and I also filed a formal willful misconduct complaint to the SSA Office of the Inspector General in MD against the NYS DDS office. In April 2003, I requested an immediate pre-hearing review of my case on the grounds of misconduct and additional physical evidence.  In order to get that process going I had to fax the OHA copies of their own regulations since the person I spoke with there had no clue what I was talking about.  Once they got all my paperwork to request the review, a senior attorney, and then a hearing and appeals judge granted my request, and my case was then sent back to the DDS office that originally denied my claim.  Finally it was seen by a different person there who actually knew how to do their job.  In two weeks my case was approved at the DDS level, but then it was selected randomly by computer (7 out of every 10 cases get chosen) for Federal review and it took another three weeks to be processed there.  One month before becoming totally bankrupt, homeless, losing my health insurance, and everything else I had worked for the last 30 years of my life, all the retro pay just showed up in my bank account exactly 1-1/2 years to the day from when I originally filed my claim.  The time I had to wait is totally unacceptable by any reasonable standards.  I actually received my official approval letter on May 26th and finally won my case by myself with no lawyer representing me.

You Can Fight And Win Your SSDI Claim On Your Own – It Is Not Mandatory To Have A Lawyer...

A bit of advice here – Take as active a roll as you can from day one when you apply for benefits, and if you are too ill, try to get a trusted family member or friend to advocate for you.  Here is where the “Squeaky wheel gets the grease” totally applies!  Why should you need to pay a lawyer to get benefits that you have earned?  This process should be set up so there is very little need for cases to advance to the hearing and appeal stage since that is where the major backlog and wait time exists.  In order to avoid a hearing, gather as much medical evidence as you can before you apply to prove your claim so your chances of approval at the initial stage are better.  Also another bit of very important info, is that you need to list EVERYTHING that is wrong with you both mental and physical, and how these conditions prevent you from performing any sort of work or daily activities.  The current SSDI claims process is set up to line the pockets of the legal system, as you are encouraged from the minute you apply for benefits to get a lawyer.  The need of lawyers/reps to navigate the system and file claims, and the cap on a lawyer's retro commission is also a disincentive to expeditious claim processing, since purposely delaying the claims process will cause the cap to max out - more money to the lawyer/rep for dragging their feet adding another cost burden to claimants.  In other words the system is structured so that it is in a lawyer’s best interest for your case to drag on since they get paid 25% of a claimant’s retro pay up to $5300 – the longer it takes the more they get. From the horror stories I hear from other claimants, many attorneys are definitely taking advantage of that situation.  This is highway robbery without the ski mask and gun and this travesty needs to change immediately!  Instead, SS should provide claimants with a listing in every state, of FREE Social Security Disability advocates/reps when a claim is originally filed in case their services may be needed.  So if you decide that you cannot do this on your own, there is free help out there if you look for it, or keep after your attorney every step of the way, as there are things that can be done to speed up this process, and do not let them tell you otherwise. 

Be Aware Of Some Very Detrimental Regulations

NOTE:  There are some very detrimental regulations that are very important to know about, that will come as a shock to you if you ever need to file for SSDI benefits.  Again I must ask you here, “How long could YOU survive with absolutely NO INCOME, if you got sick or hurt, and could no longer work?”  Under Federal law, there’s a five month benefit waiting period, and five months of back money withheld, which claimants will never see again.  It was originally six months but Congress voted to reduce it to five.  Apparently they feel that you do not need that money.  Studies have shown that most Americans have about two weeks of financial resources to live on.  SSDI recipients must also wait another 24 months, in addition to the 5 month waiting period from disability date of eligibility (the date that SS determines that you were officially disabled) in order to qualify for Medicare benefits.  Keep in mind that if you let any sort of health insurance policies lapse for too long, and don’t maintain continuous health coverage, you may have a very difficult time getting a new insurance carrier, since they may hold your poor health against you, and consider many things as “pre-existing conditions” so you may not be covered for those illnesses.  Congress expects a population who can no longer work, to go without five months of retro pay, have no health insurance, and wait several months to several years to have their disability claims processed! 

Conditions Worsen For Those Seeking Social Security Disability Benefits

Millions of people across the country become disabled unexpectedly (over 6 million people since the year 2000 applied for long-term disability benefits).  More than 1.3 million workers who applied for SSDI benefits in 2005 were denied coverage.  Nationally as of September 2007, over 65% of disability cases were denied at the initial stage of the disability claims process and it took from 101.8 – 113.7 days for claimants to receive the initial decision on their claim.  In all but 10 test states where the reconsideration phase has been removed, 87.3% of cases were denied and the waiting time for this phase was an average of 90.1 days.  NY is one of ten test states where the reconsideration phase of the SS Disability claims process has been eliminated, causing even longer wait times, up to several years in some cases, for claims to be processed.  There are about 1,417,103 total pending cases and out of that number, 154,841 are veterans.  There even are cases of Veterans, rated 100% disabled by the VA, who get denied their SSDI benefits and end up living in poverty on the streets.  Horrible treatment for those who protect and serve our country.  In 2006 there were 2,134,088 new applications for SSDI benefits and as of October 2007, there have been 1,844,898 new claims.  If a claimant appeals the initial decision, the national average time to process a hearings case is now 512 days, and that processing time continues to increase.   Nearly 300,000 hearings have already been pending over a year, and there are only 1,096 Administrative law judges (ALJ’s), to hear all those cases, with an average of 708.19 cases pending per judge nationwide.  Two-thirds of those who appeal an initial rejection eventually win their cases (New York Times 12/10/07).  Something is extremely wrong when you have to deal with the pain and suffering physically and mentally that comes along with the illnesses you have, and then have to struggle so hard to get the benefits that you have worked for all your life.  It is outright abuse at the hands of the Federal government.  There is no data on the number of people who originally filed a Social Security Disability claim that have given up, and according to a CBS News Investigation “Disabled And Waiting” which aired on 1/14/07, during 2006 and 2007, at least 16,000 people fighting for disability benefits died while awaiting a decision.

The Nightmare Will Continue

Proper funding is crucial to the success of SSA programs and there are severe, very real consequences to claimants when SSA has reduced resources.  As if things are not already bad enough now, they are about to get even worse, as the SSA is facing budget problems and employee layoffs, and office closings, just as the growing numbers of disabled/aging population needs their services more than ever. SSA has already experienced staffing cuts and the SSA will now have only a 1 of 8 employee replacement ratio for those leaving SSA and who work directly on the front lines in the field offices.  This is a claimant’s primary interview contact in the disability claims and appeals process, and this staffing cut is a great cause of concern.   Even now there is not enough staff to handle the current workloads, and the influx of new disability claims is only going to increase over time, so we face very turbulent times ahead.  In a March 2007 survey of NCSSMA (Field Office and Teleservice Center management) members in which over 2,000 responded, over 80.0% stated that their office waiting times for the public had increased in the past two years.  About a third said that waiting times were significantly longer.  In addition, about 80.0% of the respondents stated they did not have enough staff to keep their workloads current.  A January 2007 Harris poll designed to evaluate the services provided by 13 federal agencies, the public rated SSA at the bottom of the list and it was the only agency that received an overall negative evaluation.  At one time in the recent past SSA was viewed by the public as one of the best federal agencies in delivering service.  Now after substantial staffing cuts, SSA is at the bottom of the public acceptance list.  SSA Field Offices have lost over 2,500 positions since September 2005 and nearly 1,400 positions since September 2006.  In 2007 SSA Field Offices are averaging about 850,000 visitors a week.  Constituents visiting these local Field Offices continue to experience lengthy waiting times and the inability to obtain assistance via the telephone.  

When there are poor staffing levels, overworked employees, and lack of training the public suffers.  Here is just a small sampling of some of the major problems with the current Social Security Disability program and State Disability (DDS) offices who process the initial phase/medical portion of disability claims:

Severe understaffing of SSA workers at all levels of the program
Claimants waiting for weeks or months to get appointments, and hours to be seen by caseworkers at Social Security field offices 
Extraordinary wait times between the different phases of the disability claims process
Very little or no communication between caseworkers and claimants throughout the disability claims process before decisions are made.
Employees being rude/insensitive, not returning calls, not willing to provide information to claimants or not having the knowledge to do so
Complaints of lost files and in some states, case files being purposely thrown in the trash rather than processed properly
Security Breaches - Complaints of having other claimants information improperly filed/mixed in where it doesn’t belong
Fraud on the part of DDS/OHA offices, ALJ’s, IME’s – purposely manipulating or ignoring information provided to deny claims, or doctors stating that they gave medical exams to claimants that they never did.
Claimants being sent to doctors that are not trained properly, or have the proper credentials in the medical field for the illnesses which claimants are being sent to them for. 
Complaints of lack of attention/ignoring - medical records provided and claimants concerns by Field Officers, IME doctors and ALJ’s. 
Employees greatly lacking in knowledge of and in some cases purposely violating Social Security and Federal Regulations (including
Freedom of Information Act and SSD Pre-Hearing review process).  
Claimants cannot get through on the phone to the local SS office or 800 number (trying for hours even days)
Claimants getting conflicting/erroneous information depending on whom they happen to talk to at Social Security – causing confusion for claimants and in some cases major problems including improper payments
Proper weight not being given to claimants treating physicians according to SSA Federal Regulations when making medical disability determinations on claims.
Complaints of ALJ’s “bribing” claimants to give up part of their retro pay (agreeing to manipulation of disability eligibility dates) or they will not approve their claims
Poor/little coordination of information between the different departments and phases of the disability process
Complaints of backlogs at payment processing centers once claim is approved
Federal Quality Review process adding even more wait time to claims processing, increasing backlogs, no ability to follow up on claim in this phase
 
NOTE: These complaints refer to all phases of the SSDI claims process including local field offices, state Disability Determinations offices,  CE/IME physicians, Office of Hearings and Appeals, the Social Security main office in MD (800 number).

Ticket To Work Program - Catch 22 – Fear and Mistrust of the SSA

According to SSA disability guidelines:  Social Security pays only for total disability. No benefits are payable for partial disability or for short-term disability.  You have a valid claim if you have been disabled or are expected to be disabled for 12 consecutive months, or your condition will result in your death.  Your condition must interfere with basic work-related activities for your claim to be considered.  If your condition is severe but not at the same or equal level of severity as a medical condition on the list, then they must determine if it interferes with your ability to do the work you did previously. If it does not, your claim will be denied. If you cannot do the work you did in the past, the SSA looks to see if you are able to adjust to other work. They consider your medical conditions and your age, education, past work experience and any transferable skills you may have. If you cannot adjust to other work, your claim will be approved. If you can adjust to other work, your claim will be denied.  Currently the SSA forces the disabled to go through years of abuse trying to prove that they can no longer work ANY job in the national economy due to the severity of their illnesses in order to be approved for benefits.  The resulting devastation on their lives, often totally eliminates the possibility of them ever getting well enough to ever return to the work force, even on a part time basis, in order to utilize the SS Ticket to Work program.  Yet ironically once they are approved they are allowed to earn up to $900 and still receive benefits.  Confusing to say the least.  Then sometimes weeks after they are finally approved for SSD/SSI benefits, after their health and finances have been totally destroyed beyond repair, they receive a “Ticket To Work” packet in the mail, another waste of SSA funds.  A cruel joke to say the least and it is no wonder that they fear utilization of the Ticket to Work Program, and distrust the Federal Government!  The Ticket to Work Program is often viewed as a carrot and stick it to the disabled approach.  I recommend in addition to the current Ticket to Work Program, funding for the creation of an Interim (transitional) SSDI disability program for those who are chronically ill, but still may be able to work a few hours a week/month.  They would apply for interim disability benefits to start and for every month they could not work they would get a full check.  For any full month or portion of a month that they could work they would be paid the difference or nothing based on the amount of the SSDI benefit they would earn by not working that month.  They would be eligible for full Medicare benefits from the onset.  When their illnesses progressed to a point that working is no longer an option, full SSDI benefits would automatically kick in.  This would continue to increase benefits for the SSA trust fund, since these part time workers would still be contributing to the fund.   

Continuing Disability Review/CDR Process Must Be Changed

Many people suffer from conditions acquired at birth or chronic conditions that have NO cures and over time these diseases grow progressively worse with no hope of recovery or ever returning to the work force.  The threat of possible benefits cut off, and stress of a review by Social Security again is very detrimental to a recipients health.  This factor needs to be taken into consideration when reforming the CDR process.  In those cases total elimination of the tedious medical component of CDR’s should be considered, only requiring verification of contact info, or a longer period of time between reviews such as 10-15 years rather then every 3-7 years, as is currently the case.  This would save the SSA a great deal of time, money and paperwork which could then be used to get new claimants through the system faster. 

Reform Is Greatly Needed

Social Security, SSDI, SSI and Medicare are great programs when they function properly, and have helped millions of Americans who may never have survived without them.  While it is too late for me, I have vowed to make sure that nobody else has to endure this living hell.  Please contact your elected officials immediately to let them know that this is unacceptable and that the laws must be changed.  I want to see new legislation created to reform the Social Security Disability Program and I suggest that together the SSA and Congress immediately set up a task force made up of claimants who have actually gone through the SSDI system, that has major input and influence on the decision making process before any final decisions/changes/laws are instituted by the SSA Commissioner or members of Congress.  This is absolutely necessary, since nobody knows better about the flaws in the system and possible solutions to those problems, then those who are forced to go through it and deal with the consequences when it does not function properly.   Congress also needs to legislate that Social Security funds cannot be used for anything other than to pay out benefits and administer the program.  A country is only as strong as it’s most vulnerable citizens and it’s time that the government fixes the problems, so that those who really need this help can access it as soon as possible.  It is urgent that you contact your Congressional representatives on this issue.   Ask your elected officials to introduce/support the Fullerton - Edwards Social Security Disability Reform Act

Permanent Devastation Resulting From The SSDI Claims Process

Unbearable stress, severe depression and suicidal thoughts are very common side effects of the disability claims process.  I know this not only from my own personal experience, but from thousands of others that have contacted me to relate their personal experiences with the SSDI claims process.  The abuse and worry that applicants are forced to endure, causes even further irreparable damage to their already compromised health, and is totally unacceptable.  Due to the total devastation on their lives and health as a result of the SSDI claims process, use of the SS Ticket to Work program, or any future chance of possibly getting well enough to return to the work force, even on a part time basis, becomes totally out of the question.  Plus there is always the stress of having to deal with the SS Continuing Disability Review Process every few years, where the threat of having your benefits suddenly cut off constantly hangs over your head.

Many are under the mistaken notion that once the SSDI benefit checks come, if one is finally approved for disability benefits, that everything will be ok.  Often the devastation caused while waiting for SSDI claims to be processed leaves, permanent scars on one’s health and financial wellbeing as it did for me.  Even though I won my case, I continually deal with enormous stress and face the continued looming threat of bankruptcy and homelessness, due to the cost of my healthcare and basic living expenses, and I still do not qualify for any public assistance programs.  After almost dying, and continuing to battle several incurable diseases, I had to wipe out all my life savings/pension money, and will never be able to recover from the financial, physical and emotional devastation that was caused, due to the enormous wait for my SSDI claim to be processed.  Due to the 24 month waiting period for Medicare, (I didn’t become eligible for it until June 2004) I had to spend over half of my SSDI check each month on health insurance premiums and prescriptions, not including the additional co-pay fees on top of it.  All the SSDI retro pay is gone now as well – used to pay off debts incurred while waiting for 1-1/2 years to get my benefits, and even though I am now receiving my monthly SSDI checks benefits, they are no where near enough to live on for the rest of my life. 

I have no hope for the future and my “American Dream” has quickly turned into the “American Nightmare” through no fault of my own. It is hard enough to deal with all the illnesses that I have, but then to have my entire life destroyed with the stroke of pen by a neglectful government employee, to whom I was just an SS number, is more than I can bear.  So now, not only will I never recover from my illnesses, but now I also will never recover from the permanent financial devastation this has had on my life.  I don’t know how I am going to survive without some miracle like winning the lottery.  I am now doomed to spend what’s left of my days here on earth, living in poverty, in addition to all my medical concerns.  I will never be able to own a home, or get another car.  My current vehicle which is on death’s door, is the ONLY method of transportation I have for survival.  When things break down now, I cannot fix them and have to do without, and more things are breaking down every day!  This totally unbearable, continuing source of stress and frustration, is killing me.  As you can see, I know from personal experience the pain and poverty that this problematic system can cause.  I did not ask for this fate and would trade places with a healthy person in a minute.  Nobody ever thinks it can happen to them.  I am proof that it can, and remember disease and tragedy do not discriminate on the basis of age, race or sex.  If you think this could not happen to you – you could be DEAD wrong! 

WARNING:  I alert you to the case of Dane Edwards from the Rochester NY area who applied for Social Security Disability benefits in October 2006, because of terminal lung and brain cancer.  When he’d call to check on the status of his claim he was told that he must wait like everyone else, and that he should stop calling to inquire about the status.   He obviously didn’t have the luxury of time.  Dane will no longer be calling and he never received his benefits.  The last precious, few months of his life were spent in anger and frustration, fighting a system, which in the end failed him miserably.  He was 53 years old when he died on February 13, 2007 - his SSDI disability claim still waiting for approval.  Unfortunately I must report that stories like his are becoming more and more common.

LJ Fullerton - Brain Surgery - January 14th, 1997

To learn more about the various diseases I have, you can check out the following websites:
EN PLAQUE MENINGIOMA  
SCLERODERMA        
RAYNAUD’S DISEASE
CALCINOSIS  
FIBROMYALGIA 
RHEUMATOID ARTHRITIS 
SJOGREN’S SYNDROME 
HASHIMOTO’S THYROIDITIS 
CELIAC DISEASE 
TELANGIECTASIA  
SHINGLES 
IRRITABLE BOWEL SYNDROME 
DIVERTICULOSIS 
AUTOIMMUNE DISORDERS 
NORD/NATIONAL ORGANIZATION FOR RARE DISORDERS 

If you or someone you know is going through this problem please contact me or have them contact me at the e-mail address below.  There is strength in numbers, and we must now unite, speak out, and let the Federal Government know that due to their negligence and poor administrative practices, American citizens are suffering and dying, which is totally unacceptable, and we hold them accountable!

Linda Fullerton
President/Co-Founder - Social Security Disability Coalition
E-mail: ssdcoalition@hotmail.com
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