Statement of Linda Fullerton, Social Security Disability Coalition, Rochester, New York

Be aware that what I am going to say is 100% fact and is very gruesome. I need to tell you all the gory details so you can truly understand what a miracle it is that I am alive today. On Sunday 11/3/96, I bumped my head on the doorframe while exiting from my car. It stung a bit for a few moments and I thought nothing else about it. On Wednesday of that same week I started to get headaches, and a huge lump called a hematoma (blood clot) formed on the back of my skull so I starting taking Advil for the pain. I called my doctor and was told that it would be very painful for at least a month until the blood reabsorbs back into my system. On 11/23 I called the doctor because by this time the pain was getting worse not better like he said it would. I was referred to an after hours doctor who confirmed that I had a blood clot and sent me home. On 12/9 I saw the doctor again and by this time the blood clot had grown to a size of 6x2-1/2" and could be seen from across the room. The doctor ordered a CAT scan to check for a skull fracture. The blood clot did not show up on the scan because the contrast medium was not ordered and there was no fracture.

For the next month I went to the emergency room twice and was sent home both times with no results. I had x-rays, saw a neurologist, went to a pain clinic, saw a neurosurgeon and visited my own doctor several times with no relief in sight. I was given every pain killer known to man: Fiorinal, Daypro, Amitriptyline, Tylenol 3 with Codeine, Ambien, Demerol, Clonazepam, Darvoset and finally Roxicet (Morphine) - none of which helped at all. I was taking a regimen of 3 extra strength or 1 prescription Advil and alternating with 2 extra strength Tylenol every 2 hours for over a month. Even this did not help me. I even tried alternative medicine: feverfew which is normally taken for migraines which I have never had, and a topical herbal mixture of St John's Wort oil, Arnica oil and Aloe Vera Gel which had a salad dressing consistency. I would plaster this greasy mixture onto my head every day, which made my long hair a nightmare to look at and had a nasty smell to it. During this period I only missed one day of work and worked 45 hours a week even though I was not getting any sleep at all. I have never been a fan of suicide but Dr Kevorkian was looking real good at this point. I could truly understand for the first time why someone would not want to live if that was how the rest of his or her life was going to be. I would get down on my knees literally crying and praying to God to take my life so I would not have to suffer that horrible pain anymore. It really felt like something was eating my brain!

On Sunday 1/12/97, I was at my boyfriend Arnold's house and I was having a very difficult time walking. The pain was extremely excruciating and I had to lie down on the bed. After that I lapsed into a coma. The following scenario is what he told me happened, while I was in the coma since I remember nothing of the next three days. Sunday, after Arnold realized I was in trouble, he called the doctor and he told him to let me sleep it off and call him in the morning. Next day Arnold called them back and insisted that the doctor see me. He had to drag me into the office since I could not walk on my own. The doctor then told him that I probably was suffering from a drug overdose and sent me home. By Tuesday morning when I still did not wake up, Arnold was furious and called the doctor's office back and told them he was going to call an ambulance and get me to the hospital. When I arrived at the hospital Arnold talked with the neurologist that I had seen previously about what was happening and they ordered another CAT scan for me, and this time they put the contrast medium in. To the doctor's horror they saw a white mass in my cerebellum, which they could not identify. At this point a neurosurgeon was called in. He checked out the pictures and said that he would need to perform brain surgery on me the next day when he could get his team together. Thank God I was in the coma because I would have said no way! He said he was going to get his people together and be back in the morning.

After a few minutes he came back and said that after assessing the situation further, he felt that he must do emergency surgery on me that night instead of waiting because he felt I would not live until the next day. Here comes the gory part. My brain was so swollen with fluid, he had to put a hole in the top left side of my skull the size of a quarter and insert a drainage tube in. He then made an incision from the base all the way to the top of my skull. All the neck muscles were then stripped from the back of my head. When he opened me up he saw that the skull bone was full of holes and soft at the base due to an infection (Osteomyelitis) that had eaten it away. He had to cut it all away to keep it from spreading further. He then had to remove a tablespoon of pus from the cerebellum area, which ended up being the white area that had shown up in the CAT scan. The hematoma that was originally the source of my pain had become infected with two forms of strep and a staph infection, which had eaten it's way through my skull and formed an abscess in my cerebellum. If the doctors had only ordered a blood test when I was having so much pain, they would have seen that my white count was in triple digits and could have given me antibiotics, which may have killed the infection and I never would have had to have this horrible surgery. Instead they just kept taking my temperature, which was never elevated during this whole time. I usually don't get a temperature when I am sick, and the all Advil and Tylenol they had me on probably kept my temperature down as well. The next thing I personally remember was waking up in the ICU with all kinds of tubes hanging out of me, and a reverse Mohawk hair cut. They closed the huge incision with metal staples so I felt like I had a zipper up the back of my head. They had me on a mixture of three different very strong antibiotics for the first week because they had to make sure they killed all three forms of the infections. These were very strong and caused very nasty side effects. After spending two weeks in the hospital they sent me home with an IV Pic line implanted in my arm and I had to administer IV Vancomyacin to myself several times a day for the next month. I eventually developed an allergic reaction to the drug called Red Person syndrome. I was covered from head to toe with a horrible rash and had trouble breathing. Needless to say they made me stop taking the antibiotic. Since there was no other drug that would kill this type of infection I had to hope that it had done its work. I was put on a pill form of antibiotic called Biaxin for precautionary measures. By March I felt that I might be ready to go back to work but the story doesn't end here...

A few days before I was scheduled to go back to work I started having horrible pain again in the back of my head and neck. It started out as a mild stiffness and very quickly got unbearable. It was very frightening - it felt like something was eating away at my spinal cord. I thought that the Osteomyelitis (bone infection) was back again! I had several doctor visits and they could not find anything wrong with me. I learned a lot from the ordeal I had just been through and got very efficient at surfing the web. I took my life in my own hands now - you would think after all I had just been through they would listen to me but being a woman they very often don't take you seriously. I discovered on the web that one of the best tests to show up a bone infection is an MRI with contrast and I insisted that they give me one immediately. They put up a fight but I was in no mood to deal with incompetence again and I won the battle and had the test. Because I did the research myself and insisted on this test - I saved my own life this time. The MRI revealed that I had a blood clot in my brain in a very dangerous in-operable area - the left internal jugular vein. I had to make the decision to take Coumadin, which is the medical name for Warfarin (RAT POISIN). This was a tough decision because if I didn't take the Coumadin I would die for sure and the Coumadin could cause a deadly brain hemorrhage as well. I chose the risk of taking the medicine. As you can see, I made the right choice at the time but eventually my brain surgeon took me off the Coumadin after he lost a patient who bled to death from a brain hemorrhage that he couldn't save.

I now take an aspirin a day and pray as my only treatment for this huge clot in my brain. I also now suffer from several autoimmune disorders including: Hashimoto's Thyroiditis, Crest Syndrome/Scleroderma, Raynaud's, Rheumatoid Arthritis, and Fibromyalgia, which I believe were caused from my autoimmune system working so hard to fight the brain infection, that it never turned off and now is attacking the good parts of my body. The symptoms so far are Telangiectasias - red spots all over my face, and extreme intolerance to cold caused by the Raynaud's. I have already been hospitalized again from what I thought was a heart attack but was ruled to be a result of the Crest Syndrome/Scleroderma affecting my esophagus. It seems to also be affecting my digestive tract, swelling of fingers and toes, hardening of skin on my hands, and now possibly even my eyes. 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 fatigue and pain in the muscle tissues and nervous system. I live in a city that is experiencing a critical shortage of Rheumatologists and have resorted again to the Internet to find a specialist in another part of the country who may be able to consult with my doctor about my situation. 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.

You may be wondering why I did not sue for tons of money. I thought it best to let the New York State Medical Misconduct Board investigate, and they found my primary care physician not guilty 2 times because it was too unusual of a case to find him guilty. I am not bitter and am using the whole ordeal as a learning experience. Hatred is the worse form of disease that anyone can have and is very destructive and a waste of time and energy. I believe with my whole heart and soul that it is very important for my story to be heard by as many people as possible especially women who are dying by the day as I write this to you because doctors do not take their medical problems seriously enough. I have heard many horror stories since this has happened to me, and people need to know that they must start taking charge of their lives and their healthcare. If they are too sick to do it themselves they must appoint someone they trust to be an advocate for them.

If Arnold was not there, I would be dead and if I did not take charge when I was functional I would have been dead a second time! I was saved for a reason and I believe part of it is to help others by what I have learned and hopefully save some lives in the process. I am very grateful for the support of my family and friends without whom I may never had made it through this nightmare.

What am I doing now? I used to work 40 hrs a week as a computer hardware & software, purchasing agent until I became a casualty of company downsizing. I was hospitalized in the spring of 2001 for what I thought was I thought was a heart attack but was ruled to be a result of the Crest Syndrome/Scleroderma affecting my esophagus. It seems to also be affecting my digestive tract, swelling of fingers and toes, hardening of skin on my hands, and now possibly even my eyes, as a result of my worsening autoimmune disorders, which are becoming more of a challenge each day. I have been recently diagnosed with Osteopenia of the hips, Calcinosis and Tendonitis and drying eyes. As a result of a car accident in August and my progressively worsening autoimmune disorders I also am now suffering from severe neck, spine and back pain, numbness, tingling and pain in my arms, hands and feet, headaches, major fatigue, severe nosebleeds, irritable bowels, memory loss, inability to sleep or concentrate, anxiety and severe depression. In November 2002 I was back in the hospital emergency room with a horribly painful form of the chicken pox virus called shingles.

To learn more about the various diseases I have, check out the following websites:

SCLERODERMA AND CREST SYNDROME: http://www.scleroderma.org
RAYNAUD'S DISEASE: http://www.nhlbi.nih.gov/health/public/blood/other/raynaud.htm
FIBROMYALGIA: http://www.fibromyalgia.com
RHEUMATOID ARTHRITIS: http://www.arthritis.org
HASHIMOTO'S THYROIDITIS: http://www.tsh.org
TELANGIECTASIA: http://tinyurl.com/mddh
AUTOIMMUNE DISORDERS: http://www.aarda.org
SHINGLES: http://www.aftershingles.com/faq.html

I am now unable to work and have become permanently disabled with no income. For the last 30 years of my life I have contributed to the Social Security System as many millions of people do every day. I never expected to have to use the funds till I was old enough to retire. In December of 2001 I applied for Social Security Disability which I assumed would be there to help me in my time of need. I had heard nothing but discouraging stories from others but figured every case was different and anyone with the laundry list of illnesses that I have would surely be able to get the help that I needed. I was sorely mistaken and the following is what I have discovered in the process.

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 that 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, just added even more to my stress and misery. I was hoping beyond hope that I would get news that my claim would be processed and accepted. On 4/25/02, I got the incredible news that my claim had been denied! I found out that it is common knowledge on the streets and in legal circles that almost NOBODY gets accepted the first time they apply and SSD is set up to discourage everyone, even those who feel brave enough to tackle the system.

I had heard too many horror stories in doctor's waiting rooms and other places I have been, of people who have lost everything, were in homeless shelters, totally bankrupt, no health insurance and still having to deal with the stress of all their illnesses. I could not understand how it was possible that anyone could read about all the medical problems I have, and it is not totally transparent that I should qualify for benefits and should never have been denied in the first place! I know what they meant now since I was almost there myself. 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 - where is the justice?

I have also discovered that the Social Security Disability System process is set up to suck the life out of it's applicants in hope that they die in the process so they don't have to pay out any benefits to them. Millions of people across the country become disabled unexpectedly (12,000 per week in this country apply for long-term disability benefits - over 300,000 annually in NYS alone). Keep in mind when reading this, that while this is a nationwide problem, for NY State applicants it is worse than most other states in the country. The federal offices of the Social Security Administration and the Social Security Office of Public Inquiries in MD gave me that information when I contacted them about the problem yet even they were not able to help.

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. The SSD process is also set up to line the pockets of the legal system, as you are encouraged from the minute you apply to get a lawyer. Why should you need to pay a lawyer to get benefits that you have earned? Even a lawyer cannot speed up this process any more than if you file on your own. The system is structured so that it is in a lawyer's best interest for your case to drag on since they get paid a percentage of a claimant's retro pay up to $5300 - the longer it takes the more they get. This is highway robbery without the ski mask and gun and this travesty needs to change immediately! I don't know what constitutes a dire needs case in the eyes of the Social Security System but I should think that not being able to afford health insurance, medicine and other necessities of life, wiping out all your financial resources when you have no income at all because of your inability to work, is a dire need! There is no cure for any of the illnesses I have, which I stated earlier 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 - yet that is not considered a dire need? The clot in my brain and my worsening financial situation kept me from taking the medicines and seeing doctors that could help me deal with this horrible existence. As mentioned earlier, I ended up in the emergency room in November 2002 with an attack of the shingles virus which may have caused permanent nerve damage in my right arm. As far as I could tell worsening health was not a factor in speeding up SSD claims as 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, to see if I could speed up my claim, the receptionist told me, that my file was still in the un-worked status, which means that no human has even looked at the file at all since March when I originally filed my appeal. She said that nobody had been assigned to even look at the folder. I expressed my disgust that after six months in their possession that it had not even been looked at 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 or more 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. She 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. I was told that there are only 50 employees handling hundreds of thousands of cases and they, along with all us claimants critically need help now! Since my conversation with the Buffalo office I have done just that. I contacted several national media outlets (TV, radio, print), to no avail even though this issue affects thousands of people all across the country. I wrote to my congressperson Louise Slaughter, three NY state senators, the attorney general, Governor Pataki, President Bush, Vice President Cheney, Senator Charles Schumer, all of the NY State members of the House of Representatives, Senator Tom Daschle, Senator Edward Kennedy with little or no response. Louise Slaughter, Hilary Clinton and Senator Schumer's office informed me that unless I was homeless or facing utility shutoff that there is nothing they would be able to do to expedite any claim! Even though they can help fix the problem none of them has done anything to address the issue or initiate reform in this area. The Social Security Office of Inquiries and Inspector General's office in MD told me the same thing after doing an investigation with the Buffalo office of Hearings and Appeals. The government obviously does not care, as they are too busy worrying about dropping bombs, invading and investing millions in foreign countries while thousands of us are suffering and dying here at home. Little is heard about the service men and women who are injured and have to go through this same scenario to get their benefits too. Horrible treatment for those who give of their lives to protect our country. We also keep hearing about the 9/11 victims who were killed and that was a horrible thing for sure. What you are not hearing about is all the people who survived but are now disabled and facing a similar fate and nobody cares about them either. We are all being victimized all over again. Keep in mind a country is only as strong as the citizens that live there.

I called the hearings and appeals office again in March 2003 and now they were saying that 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 doctor I was sent to, and the notes of the original claim examiner that denied me, and when I received them, my worst allegations were then confirmed. Even though I have no 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. Even though I filed my disability claim based on all physical problems I have as a PRIMARY diagnosis for disability, the examiner purposely wrote depression as a primary diagnosis instead of a secondary one, so of course I would be denied 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 also filed a formal willful misconduct complaint to the Office of Inspector General's Office in Washington against the DDS office. In April 2003 I requested an immediate pre-hearing review of my case on the grounds of misconduct and more physical evidence. In order to get that process going I had to fax the hearing and appeals office copies of their own regulations since the person I spoke with in the office 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 then my case was sent back to the DDS office that originally denied my claim. Finally it was seen by a person who actually knew how to do their job. In two weeks my case was approved at the DDS level and 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. I had to wipe out my life savings and had been living off my pension from a previous employer which is almost gone. Finally one month before I lost everything I had worked for the last 30 years of my life - becoming bankrupt, homeless, and losing my health insurance, all the retro pay just showed up in my bank account on May 6th 2003 exactly 1-1/2 years to the day I originally filed. I then started to receive my SSD benefits - yet even that is not enough to live on for the rest of my life. I actually received my official approval letter on May 26th. I finally won by myself with no lawyer representing me.

To draw awareness to the Social Security Disability System and its flaws I have written an essay called "Social Security Disability Nightmare - It Can Happen To You" and I am using what I learned from my experience with the SSD system to help those still struggling get their benefits - offering educational tools, support and trying to get legislative reform of the SSD system. I am now President/Co-Founder of an organization called the Social Security Disability Coalition which I started with a woman in Nashville TN named Stephanie Varnado. She is a social worker/activist I met in January 2003 after she read a letter I posted on Congress.org. She contacted me, offered her services and we now have a website offering knowledge, support and the framework for legislative reform of the SSD system. We have over 480 members so far and have drafted an online petition with signatures from all over the country which will eventually be presented to the US Government. We hope to one day achieve our goal of complete reform of this outdated abusive system. I am now using my experience to help as many other people as I can - I don't want anyone else to suffer the hell that I just endured. This is an important issue that needs to be addressed now, and only our elected officials with your urging can get the funding and help needed to fix this critical problem. Please spread the word to everyone you can, to get this problem corrected immediately, for all the thousands of others that are currently suffering through this horrible process. 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. Anyone of you reading this could be one step away from walking in my shoes at any moment!

I have learned a lot from what happened to me and want the world to learn from my experience before I depart from it. Please share this story with your friends and family and feel free to contact me if you have any questions or comments. Thanks for your precious time to let me share this experience with you.

SOCIAL SECURITY DISABILITY REFORM PETITION

Money is taken out of your paychecks every week for Social Security, and SSD and as of January 2003 the US government GAO has designated Social Security Disability a HIGH risk area for 2003. You could face homelessness, bankruptcy and even death trying to get your benefits when you need them the most. Anyone could suddenly find themselves in a situation where they need to access this fund – such as an accident, catastrophic illness, a victim of a crime, military personnel, veterans and now we have the threat of terrorist attacks – these are unfortunate realities of life. Millions of people across the country become disabled unexpectedly - 12,000 per week in this country apply for long-term disability benefits. What happens if your work disability insurance runs out, if you don’t have it, or worse yet become unemployed? You will then need to turn to the most mismanaged system in the country – the Social Security Disability System. What you will find is that the current system is set up to kill you so they don’t have to pay you. Billions of dollars are being spent in foreign lands and on pork barrel programs, and we want the government to focus on and fix this growing problem here at home now. Here are just a few of the major issues we would like to see addressed:

We are concerned about what transpires from the first point of contact, the filing for benefits, and the final outcome or status. Disability benefits determinations should be based solely on the physical or mental disability of the applicant. Neither age, education or any other factors should ever be considered when evaluating whether or not a person is disabled. Discrimination of this form is highly illegal in this country, yet this is a standard practice when deciding Social Security Disability determinations and should be considered a violation of our Constitution. This practice should be addressed and eliminated immediately. Many people who apply for disability don’t “look” sick - you can’t tell if a person has cancer, heart disease, diabetes or any other debilitating diseases just by looking at them. We did not chose this fate it was forced upon us! Yet we are treated as “disposable people” and often viewed as lazy or frauds. The extraordinary time it takes to process a claim from the original filing date should be eliminated. Why should we have to become homeless, bankrupt, starve, lose our healthcare coverage, suffer untold stress on top of our illnesses, and even die trying to get our benefits? We are now being told that because of the backlog that these are the only circumstances that anyone will even look at our paperwork now no matter how sick we are. Why should we have to file for welfare, food stamps and Medicaid after we have lost everything due to this backlog - another horrendous process - because of the inadequacies in the Social Security Disability offices and then have to pay Social Services back from our measly benefit checks? Nobody else who files for public assistance has to do that – why are disabled people being discriminated against?

If we provide sufficient medical documents when we originally file for benefits why should we ever be denied at the initial stage, have to hire lawyers, wait years for hearings, go before administrative law judges and be treated like criminals on trial? Too much weight at the initial time of filing, is put on the independent medical examiner’s opinion who only sees you for a few minutes and has no clue how a patient’s medical problems affect their lives after only a brief visit with them. An even worse problem is the poor review of cases by DDS caseworkers which causes too many unjustified delays and denials. Decisions should be based more on the treating physicians opinions, and medical records. The listing of diseases that qualify a person for disability should be expanded and updated more frequently to include newly discovered crippling diseases such as the many autoimmune disorders that are ravaging our citizens.

We have contributed our hard earned money to this system hoping we would never need it until we were ready to retire. Where is the money going that has been robbed from our paychecks every week? Disease and tragedy does not discriminate based upon age, race, sex or any other factor. The disabled citizens of this nation have been forced to tackle a very daunting system . We challenge you to do the same and expose and correct this problem on a national level. The Social Security Administration, a Federal program, administered by the states will admit that our elected officials have the power to reform the system. Why should we have to become homeless, bankrupt, starve, lose our healthcare coverage, suffer untold stress on top of our illnesses and even die trying to get our benefits? We the undersigned say to all members of the US Government:

For everyone of us that starves, becomes homeless or loses our healthcare during this process – we blame you!
For everyone of us who files for bankruptcy during this process – we blame you!
For the unfathomable stress and suffering we have inflicted upon us during this process – we blame you!
For everyone of us who becomes more ill or worse yet dies during this process – we blame you!

We want to know why our elected officials seem to be ignoring this crisis and doing nothing to reform it? We want to know what, if anything is being done to correct this critical issue that affects millions of sick and dying Americans. Please start taking care of the US citizens living in this country whom elected you into office. It is your duty as elected officials to serve all those that voted you into that office and even those of us who didn't. When the next election comes around we will not forget those who have forgotten us. The government may be trying to rob millions of disabled people from their money, and also neglect us, but remember we millions of citizens still have, and will use our right to vote. A country is only as strong as the citizens who live in it. On behalf of the Social Security Disability Coalition we ask, disabled and healthy Americans alike, that you please do something to fix this serious problem now!

SOCIAL SECURITY DISABILITY COALITION

 WHO WE ARE:

The Social Security Disability Coalition has been created because we are concerned about what transpires from the first point of contact, the filing for benefits, and the final outcome or status. We are a group of social services representatives and disabled individuals, who are deeply concerned about the way fragile populations in this country are suffering under the SSDI application process. Our objective is to accumulate a constituency and the data necessary to help implement change in this area. We’re currently gathering information that will assist us in tracking trends and other information necessary for a full assessment that can be presented to legislators and media. We are working very rapidly to lay a foundation for change.

OUR GOALS:

We want disability benefits determinations to be based solely on the physical or mental disability of the applicant. Neither age, education or any other factors should ever be considered when evaluating whether or not a person is disabled. Discrimination of this form is highly illegal in this country, yet this is a standard practice when deciding Social Security Disability determinations and should be considered a violation of our Constitution. This practice should be addressed and eliminated immediately.

We want to eliminate the extraordinary time it takes to process a claim from the original filing date. Why should we have to become homeless, bankrupt, starve, lose our healthcare coverage, suffer untold stress on top of our illnesses, and even die trying to get our benefits? We are now being told that because of the backlog that these are the only circumstances that anyone will even look at our paperwork now no matter how sick we are. Why should we have to file for welfare, food stamps and Medicaid after we have lost everything due to this backlog - another horrendous process - because of the inadequacies in the Social Security Disability offices and then have to pay Social Services back from our measly benefit checks? Nobody else who files for public assistance has to do that – why are disabled people being discriminated against?

If we provide sufficient medical documents when we originally file for benefits why should we ever be denied at the initial stage, have to hire lawyers, wait years for hearings, go before administrative law judges and be treated like criminals on trial?

Too much weight at the initial time of filing, is put on the independent medical examiner’s and caseworker’s opinion of your claim. The medical examiner only sees you for a few minutes and has no clue how a patient’s medical problems affect their lives after only a brief visit with them. The caseworker never sees you at all! The decision should be based more on the treating physicians opinions and medical records.

The listing of diseases that qualify a person for disability should be updated more frequently to include newly discovered crippling diseases such as the many autoimmune disorders that are ravaging our citizens.

We want to know why our elected officials are ignoring this crisis and doing nothing to reform it? We hope to raise awareness of this problem and join with our elected officials in implementing legislation that will correct this crisis situation.

SOCIAL SECURITY DISABILITY COALITION – SYSTEM REFORM GOALS

We want disability benefits determinations to be based solely on the physical or mental disability of the applicant. Neither age, education or any other factors should ever be considered when evaluating whether or not a person is disabled. Discrimination of this form is highly illegal in this country, yet this is a standard practice when deciding Social Security Disability determinations and should be considered a violation of our Constitution. This practice should be addressed and eliminated immediately.

All SSD case decisions must be determined within three months of original filing date. When it is impossible to do so a maximum of six months will be allowed for appeals, hearings etc – NO EXCEPTIONS. Failure to do so on the part of SSD will constitute a fine of $500 per week for every week over the six month period - payable to claimant in addition to their awarded benefit payments and due immediately along with their retro pay upon approval of their claim. SSD will also be held financially responsible for people who lose property, automobiles, IRA’s, pension funds, who incur a compromised credit rating or lose their health insurance as a result of any delay in processing of their claim, which may occur after the initial six month allotted processing period.

Waiting period for initial payment of benefits should be reduced to two weeks after first date of filing instead of the current five month waiting period.

Prime rate bank interest should be paid on all retro payments from first date of filing due to claimants as they are losing it while waiting for their benefits to be approved.

Immediate eligibility for Medicare/Medicaid upon disability approval with NO waiting period instead of the current 2 years.

If we provide sufficient medical documents when we originally file for benefits why should we ever be denied at the initial stage, have to hire lawyers, wait years for hearings, go before administrative law judges and be treated like criminals on trial?

Too much weight at the initial time of filing, is put on the independent medical examiner’s and caseworker’s opinion of your claim. The medical examiner only sees you for a few minutes and has no clue how a patient’s medical problems affect their lives after only a brief visit with them. The caseworker never sees you at all! The decision should be based more on the treating physicians opinions and medical records.

SSD required medical exams should only be performed by board certified independent doctors who are specialists in the disease that claimant has (example – Rheumatologists for autoimmune disorders, Psychologists and Psychiatrists for mental disorders)

ALL doctors should be required by law to have seminars in proper procedures for writing medical reports and filling out forms for Social Security Disability and SSD claimants. This should be made a part of their continuing education program to keep their license. These seminars should be provided to the doctors free of charge by the Social Security Administration.

All forms used by Social Security for Disability Determination purposes should be made available online for claimants, medical professionals and attorneys. The forms and reports should be uniform throughout the system. One universal form for claimants, doctors, attorneys and SSD caseworkers. Reduce duplication of paperwork. They should be more comprehensive for evaluating a claimant’s disability and coordinated with the Doctor’s Bluebook Listing of Impairments.

Universal network between Social Security, SSD/SSI and all outlets that handle these cases so claimants info is available to caseworkers handling claims no matter what level/stage they are in the system. Will create ease in tracking status and updating info.

Lost records fine – if Social Security loses a claimants records or files an immediate $1000 fine must be paid to claimant.

Review of records by claimant should be available at any stage of the SSD determination process. Before a denial is issued at any stage, the applicant should be contacted as to ALL the sources being used to make the judgment. It must be accompanied by a detailed report as to why a denial might be imminent, who made the determination and a phone number or address where they could be contacted. In case info is missing or they were given inaccurate information the applicant can provide that information before a determination is made.

Independent medical exams requested by Social Security must only be required to be performed by doctors who are located within a 15 mile radius of a claimants residence. If that is not possible – Social Security must provide for transportation or travel expenses incurred for this travel by the claimant.

The listing of diseases that qualify a person for disability should be updated more frequently to include newly discovered crippling diseases such as the many autoimmune disorders that are ravaging our citizens.

Why should we have to file for welfare, food stamps and Medicaid after we have lost everything due to this backlog - another horrendous process - because of the inadequacies in the Social Security Disability offices and then have to pay Social Services back from our measly benefit checks? Nobody else who files for public assistance has to do that – why are disabled people being discriminated against? There should be immediate approval for social services (food stamps, cash assistance, medical assistance, etc) benefits for SSD claimants that does not have to be paid back out of their SSD benefits once approved.

Audio and/or videotaping of Social Security Disability ALJ hearings and during IME exams allowed to avoid improper conduct by judges and doctors.

Strict code of conduct for Administrative Law Judges in determining cases and in the courtroom. Fines to be imposed for inappropriate conduct towards claimants.

A state listing of FREE Social Security Disability advocates to be provided at time of original filing of claim.

We want to know why our elected officials are ignoring this crisis and doing nothing to reform it?