SOCIAL SECURITY DISABILITY NIGHTMARE – IT COULD HAPPEN TO YOU!!!

http://www.frontiernet.net/~lindaf1/SOCIALSECURITYDISABILITYNIGHTMARE.html

I am considered by most standards to be middle aged, and for the last 30 years of my life I have contributed to the Social Security system as many millions of people do every day.  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 and the result is an incredible story of medical incompetence, which resulted in major brain surgery.  You can read about it on my web page titled "A Bump On the Head"  I now take an aspirin a day and pray, as my only treatment for a huge blood clot in the left internal jugular vein in my brain.  I also now suffer from several autoimmune disorders including: Hashimoto’s Thyroiditis, Calcinosis, Scleroderma, Raynaud’s Disease, Rheumatoid Arthritis, Esophageal Reflux Disease, which I and the doctors believe were caused by my autoimmune system working so hard to fight the brain infection.  My immune system never stopped fighting once my brain infection was gone like it was supposed to, and it is now attacking the good parts of my body.  The problems I live with now are many including, Telangiectasias – red spots all over my face, and extreme intolerance to cold caused by the Raynaud’s. My fingers and toes turn white like I am dead when exposed to cold temperatures of any kind, and they become stiff and excruciatingly painful.  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.  I was hospitalized again in the spring of 2001 for 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, and causing swelling of fingers and toes, hardening of skin on my hands, and now possibly even affecting my eyes causing them to dry out.   I have also been  diagnosed with Osteopenia of the hips, and Tendonitis. Calcinosis which is the formation of calcium deposits on bones/joints causing inflammation and pain, is getting worse especially around my elbows and thumbs.  As a result of a car accident in August 2001, I now in addition to everything else suffer from Fibromyalgia, causing fatigue and pain in the muscle tissues and nervous system along with a host of other symptoms, 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 and which has caused some permanent nerve damage in my right arm.   

I did my best to function in spite of my fate but the diseases have 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.  I have become permanently disabled due to the progression of all my illnesses, to the point where I am no longer able to earn an income.  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 had, and with the documentation to prove it, that surely  I would be able to get the help that I needed.  I was sorely mistaken and the following is what I have discovered in the process.  The Social Security Disability System 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 benefits to them. 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.  Since many SSD applicants are forced into poverty while waiting for their claims to be processed (many years in some cases), they have to apply for state programs in addition to SSD such as Medicaid, food stamps, cash assistance and other state funded programs. Another very stressful demeaning process to say the least.  The abuses of this Federal program endured by applicants, have also caused an enormous burden on state Social Service programs across this nation as well, which 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.  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.  Claimants who file for Social Services while waiting to get SSD benefits in many states, have to pay back the state out of their meager SSD/SSI 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 for the rest of their lives, have to rely on two funded programs instead of just one.  This practice of pay back to the states out of SSD benefits is discrimination against the disabled, and needs to be eliminated.  I was hoping beyond hope that I would get news that my claim was approved but on 4/25/02, I got the incredible news that my claim had been denied! I found out that it’s common knowledge on the streets and in legal circles that very few get approved (over 68% are denied at the initial stage) the first time they apply, and the SSD process is set up to discourage everyone, even those who feel brave enough to tackle the system.  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! 

The Social Security Disability System is structured to be very complicated, confusing and with as many roadblocks as possible,  so applicants will 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.  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 hundreds of others that have contacted me to relate their personal experiences with the SSD system.  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 SSD 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. 

Millions of people across the country become disabled unexpectedly (over 6 million people since the year 2000 applied for long-term disability benefits – over 300,000 file 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 any other state in the country.  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.  I was given this information directly from the SSA itself when I contacted them about the problem, and yet 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.  It is outright abuse at the hands of the Federal government. 

The current SSD process is also 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.  Why should you need to pay a lawyer to get benefits that you have earned?  The claims 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. The need of lawyers/reps to navigate the system and file claims, and the SSD 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.

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 also 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 even that in the eyes of the SSA, is not considered a dire need!  Something is seriously wrong with that picture.  Again, 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 know worsening health is 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, 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 the SSA, 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!  That just proves even further how poorly run the SSD program is.  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.   I contacted several national media outlets (TV, radio, print) who showed no interest in the problem  even though this issue affects thousands of people all across the country.  I wrote to ALL my elected officials including three NY state senators, my Congresswoman, my Assemblyman, the attorney general, the Governor, the President, Vice President, and various other members of Congress with little or no response.  As a registered voter myself, I was very disappointed, disillusioned, and disgusted that my elected officials whom I have supported in 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.  They are the ones who can help fix the problem, yet none of them have done anything to address the issues or initiate reforms in this area.  I also contacted the Social Security Office of Public Inquiries and the Inspector General’s office in MD on the problems I was dealing with, and after doing an investigation with the Buffalo office of Hearings and Appeals,  they told me the same thing – to contact my worthless elected officials.
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 also filed a formal willful misconduct complaint to the Office of the Inspector General in Washington DC against the 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 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 was living off my pension from a previous employer which is totally gone now, due to the enormous wait. 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.  I actually received my official approval letter on May 26th and finally won my case by myself with no lawyer representing me. All the SSD 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 SSD checks benefits, they are no where near enough to live on for the rest of my life.  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.Congressional offices in some cases contact Social Security on behalf their constituents going through the SSD process, so they must be aware that there are so many problems.   The government obviously does not care, as they are too busy worrying about dropping bombs, invading and investing millions in foreign countries, and going to Mars while thousands 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.  Little or nothing 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.  Then there are the 9/11 victims who survived that day, but are now disabled and facing a similar fate.  We are all being abused at the hands of our government, and to date our cries for help have continually been ignored.  This bi-partisan apathy and attitude of our politicians is not only unacceptable but it is criminally negligent, behavior, and our elected officials 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.  This important issue 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.  Keep in mind a country is only as strong as the citizens that live there, yet the Social Security Disability process not only preys on the weak, but does its best to decimate the disabled population even further.  A personal goal of mine is to one day speak before Congress, to raise the awareness of this crisis situation.  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 don’t want anyone else to suffer the hell that I endure on a daily basis, so I am using what I learned from my experiences 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 1000 members so far, made up of disabled Americans from all over the nation who are helping each other, and I have created an online petition with thousands of signatures and horror stories 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 overly abusive system. A major step towards reaching that goal is that the SSD Coalition, now provides constant feedback to the Social Security Disability New Approach program started by the Commissioner of the Social Security Administration in January 2004.  In July of 2004 the SSD Coalition made (Center for Disability Rights - Rochester) CDR Annual Disability Rights Top 10 List. 

If you or anyone you know has to file a claim to get Social Security Disability here is just a small sampling of the of the constant complaints we at the coalition receive about the Social Security Disability system and its employees: Extraordinary wait times between the different phases of the disability claims process.  Employees being rude/insensitive to claimants. Employees outright refusing to provide information to claimants or do not have the knowledge to do so. Employees not returning phone calls.  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 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.  Complaints of lack of attention or totally ignoring - medical records provided and claimants concerns by Field Officers, IME doctors and ALJ’s.  Fraud on the part of DDS/OHA offices, ALJ’s, IME’s – purposely manipulating/ignoring information provided to deny claims. Complaints of lost files and of files never looked at, being purposely thrown in the trash.  Complaints of having other claimants information improperly filed/mixed in where it doesn’t belong causing breach of security.  Poor/little coordination of information between the different departments and phases of the disability process.  These complaints refer to all phases of the SSD process including local office, Disability Determinations, Office of Hearings and Appeals and the Social Security main office in MD (800 number).  In spite of all the problems with the system, I strongly suggest that if you are truly disabled and need to file a claim, that you do so, and do not get discouraged or give up, as that is what the government wants you to do and how they rob you of your money.  Instead get educated, and use what ever strength you can muster to fight back.  If you are too sick to fight on your own, then get a family member, trusted friend or disability advocate to help you.  Contact all your elected officials and the media and tell them what is happening  to you and the other disabled citizens in this country.  The only way we are ever going to get these problems corrected is if everyone starts spreading the word and complaining out loud in a big way about them. 

Again 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.  Since the current Medicare program discriminates against disabled Americans making them wait for 24 months after their disability date of entitlement, I didn’t become eligible for Medicare until June 2004, having to spend over half of my SSD check each month on health insurance premiums and prescriptions, not including the additional co-pays fees on top of it.  In July of 2004 I had surgery for stage one Melanoma Skin Cancer and I am hoping that it was caught in time.  I do not 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.  The American dream has now become the American nightmare for 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.  Anyone reading this, including you, 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 experiences before I depart from it, so please share this story with as many people as possible so nobody else ever has to live like this. Thanks for your precious time.


LJ Fullerton - Brain Surgery January 14, 1997

To learn more about the various diseases I have, you can check out the following websites:
SCLERODERMA AND CREST SYNDROME 
RAYNAUD’S DISEASE  
FIBROMYALGIA  
RHEUMATOID ARTHRITIS
HASHIMOTO'S THYROIDITIS
AUTOIMMUNE DISORDERS
CALCINOSIS
TELANGIECTASIA
SHINGLES VIRUS

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 unite now, speak out, and let the government know that due to their negligence and poor administrative practices people are dying here at home in record numbers on a daily basis.

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

Please join the Social Security Disability Coalition
Offering FREE knowledge and support with a focus on SSD reform

Please sign the Social Security Disability Reform Petition
Read the horror stories from all over the nation

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 national group of social services representatives, grass roots organizations 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, offering to our members, FREE knowledge and support with a major focus on SSD reform. 

OUR GOALS:

We hope to one day achieve our main goal of complete reform of this outdated abusive system. A major step towards reaching that goal is that the SSD Coalition, now provides constant feedback directly to the Social Security Disability New Approach program started by the commissioner of the Social Security Administration in January 2004.

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? We want this practice to end.

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.