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

Members of the Committee:

My name is Linda Fullerton, I am permanently disabled and receive Social Security Disability Insurance/SSDI and Medicare. I am also President/Co-Founder of the Social Security Disability Coalition, which is made up of thousands of Social Security Disability claimants and recipients from all over the nation.  Our group and experiences, are a very accurate reflection and microcosm of what is happening to millions of Social Security Disability applicants all over this nation.   I must take this opportunity to tell you how very proud I am of all our members, many like myself, whose own lives have been devastated by a system that was set up to help them.  In spite of that, they are using what very little time and energy they can muster due to their own disabilities, to try and help other disabled Americans survive the nightmare of applying for Social Security Disability benefits.  There is no better example of the American spirit than these extraordinary people!  If you visit the Social Security Disability Coalition website, or the Social Security Disability Reform petition website:

Social Security Disability Coalition – offering FREE knowledge and support with a focus on SSD reform:

http://groups.msn.com/SocialSecurityDisabilityCoalition

Sign the Social Security Disability Reform Petition – read the horror stories from all over the nation:

http://www.petitiononline.com/SSDC/petition.html

You will read over three years worth of documented horror stories and see thousands of signatures of disabled Americans whose lives have been harmed by the Social Security Disability program.  You cannot leave without seeing the excrutiating pain and suffering that these people have been put through just because they happened to become disabled, and went to their government to file a claim for disability insurance that they worked so very hard to pay for.  I continually throughout the Commissioner’s Disability New Approach Program sent her hundreds of their stories/comments from our website and petition and yet nowhere in her DSI plan do I see any real help/relief for them. 

My organization fills a void that is greatly lacking in the SSA claims process.   While we never represent claimants in their individual cases, and in most cases due the nature of our group, we don’t even know their real names for privacy concerns, we are still able to provide claimants with much needed support and resources to guide them through the nebulous maze that is put in front of them when applying for SSDI/SSI benefits.  In spite of the fact that the current system is not conducive to case worker, client interaction other than the initial claims intake, we continue to encourage claimants to communicate as much as possible with the SSA in order to speed up the claims process, making it easier on both the SSA caseworkers and the claimants themselves.  As a result we are seeing claimants getting their cases approved on their own without the need for paid attorneys, and when additional assistance is needed we connect them with FREE resources to represent them should their cases advance to the hearing phase.   We also provide them with information on how to access available assistance to help them cope with every aspect of their lives that may be affected by the enormous wait time that it currently takes to process an SSDI/SSI claim, including where to get Medicaid and other State/Federal programs, also free/low cost healthcare, medicine, food, housing, financial assistance and too many other things to mention here.  We educate them in the policies and regulations which govern the SSDI/SSI process and connect them to the answers for the many questions they have about how to access their disability benefits in a timely manner, relying heavily on the SSA website to provide this help.  If we as disabled Americans, who are not able to work because we are so sick ourselves, can come together, using absolutely no money and with very little time or effort can accomplish these things, how is it that the SSA which is funded by our taxpayer dollars fails so miserably at this task?

The Social Security Disability New Approach Program at its inception, was a welcome change from what we have seen in decades past.  Everyone that I have dealt with on the Commissioner’s staff was very courteous and responsive to our concerns at the time and I am very grateful for that.  We kept in constant communication with them as much as we were allowed to participate.  I have also been privileged to interact with other employees of the SSA who have been of great help to my organization as well, in particular members of AFGE/National Council Of SSA Field Operations Locals American Federation Of Government Employees.  In spite of my own personal nightmare SSDI claims experience which I will be describing, and the horror stories I hear on a daily basis, I am well aware that there are very hard working, committed, caring people who work for this program.  One of our goals is to increase the lines of communication between th the SSA and the disabled community.

That being said, DSI does not go far enough, fast enough for those who desperately need to access disability benefits and whose very lives depend on them.  It greatly disappoints me that the Commissioner has not addressed most of the problems that my organization, and hundreds of others had alerted her office about as part of the SS Disability New Approach Program, in fact our cries for help have been virtually ignored when making her recent regulation changes.  I find it to be a shame and disservice to the American taxpayers.  It seems that the regulations that have now been put in place will not do very much if anything to relieve this horrendous situation, and for the most part will be very detrimental to the disability claims process, rather than improve it.   As mentioned, I have been in direct communications with AFGE/National Council Of SSA Field Operations Locals American Federation Of Government Employees, AFL-CIO who represents thousands of Social Security Workers for the past few years now and we have been trying together to clean up the problems that would make the disability claims process better for both sides - the disability claimants and the SSA workers themselves.  It is amazing, and very refreshing to learn about how much we agree, on the changes needed to make the SSDI/SSI process easier.  They have been extremely helpful to my group which has allowed me to better help those struggling to get these crucial benefits.  If we can do these things together I see no reason why the SSA Commissioner (if she was doing her job properly) would not want us actively involved every step of the way in these changes that she is making.  While I know the SSA is doing their very best with the resources they have, they cannot do it alone, as many things needed to truly reform this system, must be legislated by Congress.  So I call on you today to start taking this crisis seriously as many lives literally depend on your actions.

As a person who has gone through the Social Security Disability claims process myself, I know first hand about the pain, financial, physical and emotional devastation that the current problematic SSDI process can cause, and I will never be able to recover from it, since I can no longer work.  I find it disturbing that at this latest hearing and at past hearings, that glaringly absent from your panel was representation from other disability organizations such as mine.  You continually choose the same panelists from the disability community when there is any representation at all.  I ask again as I have in the past, that in future Congressional hearings on these matters, that I be allowed to actively participate instead of being forced to always submit testimony in writing, after the main hearing takes place.  I am more than willing to testify in person before Congress and I should be permitted to do so.  I want a major role in the Social Security Disability reformation process, since any changes that occur have a direct major impact on my life and our members lives and well being.  Who better to give feedback at these hearings than those who are directly affected by its flaws!  A more concerted effort needs to be utilized when scheduling future hearings, factoring in enough time to allow panelists that better represent a wider cross section of the American population, to testify in person.  It seems to me that if this is not done, that you are not getting a total reflection of the population affected, and are making decisions on inaccurate information which can be very detrimental to those whom you have been elected to serve. 

From GAO testimony to your committee on 6/15/06:  “Finally, SSA’s communication efforts with stakeholders align with change management principles in several respects. For example, SSA has employed a proactive, collaborative approach to engaging the stakeholder community both during DSI’s design and in its planning for implementation in order to explain why change is necessary, workable, and beneficial. Even before the notice of proposed rule making on DSI was published, SSA began to meet with stakeholder groups to develop the proposal that would eventually shape the new structure. Then, once the proposed rule was issued, SSA officials told us they formed a team to read and analyze the hundreds of comment letters that stakeholders submitted.   In addition, they conducted a number of meetings with external stakeholders to help the agency identify common areas of concern and develop an approach to resolving the issues stakeholders raised before rollout began.  According to SSA officials responsible for these meetings, the Commissioner attended more than 100 meetings to hear stakeholder concerns directly.  Further, SSA recently scheduled a meeting for early July with claimant representatives to discuss that group’s particular concerns about how the new process will affect their work and their disability clients. SSA officials told us that senior-level staff will lead the meeting and that about 100 claimant representatives from the Boston region will attend.”

“While SSA’s steps and plans look promising, we want to stress the importance of diligence and follow-through in two key areas. The first is quality assurance, which entails both effective monitoring and evaluation. A solid monitoring plan is key to helping SSA quickly identify and correct problems that surface in the Boston rollout, because any failure to correct problems could put the entire process at risk. An evaluation plan is critical for ensuring that processes are working as intended and that SSA is achieving its overarching goals of making accurate, consistent decisions as early in the process as possible. The second key area is communication. It is important for SSA’s top leadership to support open lines of communication throughout implementation if the agency is to facilitate a successful transition. Failure to, for example, provide useful feedback to staff - many of whom will be new to the agency or at least to the new tools - could significantly jeopardize opportunities for improvement. Just as important, SSA’s top management needs to ensure that the concerns and questions of stakeholders affected by the new process are heard, and that concerned parties are kept apprised of how SSA intends to respond.”

It does not seem to me that SSA is off to a very good start in that area.  I continually asked to be part of such meetings if and when they were ever held, but was never informed of any them, thus was not allowed to participate.   Since my organization primarily consists of SSDI/SSI claimants, I have to question what sorts of “stakeholders” the Commissioner met with.  Seems like her main concern is to meet with “stakeholders” who stand to make the most money from a claimant’s problems with the SSDI/SSI program rather than the claimant’s themselves who are most affected by those problems.  This is further evidenced by the list of “stakeholders” referenced in the aforementioned GAO testimony.  Again proof of the Federal Government catering to special interest groups.  While many of these “claimant representatives” may have good intentions, unless they personally experience what it is actually like to live through the process of applying for these benefits, and have their lives permanently altered as a result of it, they can never accurately convey to anyone what the problems with dealing with a severely broken system is like for us.  If this system is ever to be reformed properly, it is crucial that before any changes to this program are implemented, that the majority of input/involvement in any phase of change be with a team of actual SSDI/SSI claimants and the SSA workers themselves who must implement any proposed changes.

The Commissioner in the past has stated “In drafting this final rule, we understood that, although there was broad agreement on the need for change, numerous commenters perceived our proposed rule as favoring administrative efficiency over fairness.”

It is very detrimental to the American people, if the Commissioner is using their hard earned money to harm them for the sake of efficiency rather than make it a priority to take every step necessary to see that their cases are processed fairly as well as quickly.  We fear rubberstamping of denials for the sake of efficiency, which is in fact ignoring the will of the people.

It is my understanding that Congressman Levin suggested during the hearing that the General Accounting Office (GAO) should conduct a study and cost analysis of DSI.  After my own personal experience with filing a claim for SSDI benefits dealing with enormous processing time and the totally unnecessary problems I encountered,  I also agree that their should be major oversight by an independent body of all phases of the disability claims process.  I agree with the Congressman that the GAO would do well to be involved in investigating further how the Commissioner’s proposals would not only affect the SSA, but more importantly how her proposals would affect the claimant’s themselves, which after all our input, she continues to ignore.

We ask that the GAO review processing times of all phases of the disability claims process with particular focus on the DDS offices and the ALJ’s where the largest bottlenecks and inconsistencies in the program are found.  In addition we want the GAO to consider recommending to Congress that they move to legislate that the Federal Government take over the role that the DDS offices now perform.  We have seen a wide range of denial/approval rates and processing times for the same classifications of disabilities based entirely on the state in which a claimant lives, or which DDS worker (their training is very inconsistent by state) happens to handle their claim.  This should not be allowed and in fact most people including elected officials are not aware that DDS workers are state, rather than Federal employees.  It is widely known that the following Federal Standards are not being met by the DDS offices as the program is currently structured:

404.1642 Processing time standards http://www.ssa.gov/OP_Home/cfr20/404/404-1642.htm

(a) General. Title II processing time refers to the average number of days, including Saturdays, Sundays, and holidays, it takes a State agency to process an initial disability claim from the day the case folder is received in the State agency until the day it is released to us by the State agency. Title XVI processing time refers to the average number of days, including Saturdays, Sundays, and holidays, from the day of receipt of the initial disability claim in the State agency until systems input of a presumptive disability decision or the day the case folder is released to us by the State agency, whichever is earlier.

(b) Target levels. The processing time target levels are:

(1) 37 days for title II initial claims.

(2) 43 days for title XVI initial claims.

(c) Threshold levels. The processing time threshold levels are:

(1) 49.5 days for title II initial claims.

(2) 57.9 days for title XVI initial claims. [46 FR 29204, May 29, 1981, as amended at 56 FR 11020, Mar. 14, 1991]

404.1643 Performance accuracy standard                                                                                       http://www.ssa.gov/OP_Home/cfr20/404/404-1643.htm

(a) General. Performance accuracy refers to the percentage of cases that do not have to be returned to State agencies for further development or correction of decisions based on evidence in the files and as such represents the reliability of State agency adjudication. The definition of performance accuracy includes the measurement of factors that have a potential for affecting a decision, as well as the correctness of the decision. For example, if a particular item of medical evidence should have been in the file but was not included, even though its inclusion does not change the result in the case, that is a performance error. Performance accuracy, therefore, is a higher standard than decisional accuracy. As a result, the percentage of correct decisions is significantly higher than what is reflected in the error rate established by SSA's quality assurance system.

(b) Target level. The State agency initial performance accuracy target level for combined title II and title XVI cases is 97 percent with a corresponding decision accuracy rate of 99 percent.

(c) Intermediate Goals. These goals will be established annually by SSA's regional commissioner after negotiation with the State and should be used as stepping stones to progress towards our targeted level of performance.

(d) Threshold levels. The State agency initial performance accuracy threshold level for combined title II and title XVI cases is 90.6 percent.

The following GAO reports over the past several years prove that there are major problems with this program:

GAO-04-656 - More Effort Needed To Assess Consistency of Disability Decisions – July 2004

GAO-03-117 - Social Security Administration: Major Management Challenges and Program Risks – January 2003

GAO-03-119 - High Risk Series: An Update – January 2003

GAO-02-826T -  Social Security Disability: Significant Problems Persist and Difficult Decisions Lie Ahead

GAO-02-322 - Disappointing Results From SSA's Efforts to Improve the Disability Claims Process Warrant Immediate Attention

GAO/HEHS-97-28 - APPEALED DISABILITY CLAIMS: Despite SSA’s Efforts It Will Not Reach Backlog Reduction Goal

GAO/HRD-94-11- Increasing Number of Disability Claims and Deteriorating Service

GAO/HEHS-94-34 - Disability Rolls Keep Growing While Explanations Remain Elusive

Productivity/Poor Customer Service

The Commissioner has stated:  “SSA is a good and worthy investment. Our achievements over the last year are proof that resources provided to SSA are used efficiently and effectively to administer America’s social security programs.” 

It is very true that SSA is a good and worthy investment when it works properly to provide vital disability benefits to claimants in a timely manner, but from the Federal regulations that are violated on a daily basis and the GAO reports to date, this is not the case at all.  This statement shows that the Commissioner is totally out of touch with what is happening on her watch.  I would be more that willing to speculate that any other corporation in this country who ran their business this poorly, would be out of business in it’s first year!  By client standards SSA customer service is extremely poor and in major need of improvement across the board.  Here is just a small sampling of the constant complaints we receive about the Social Security Disability system and its employees:

Severe understaffing of SSD workers at all levels of the program

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 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 files 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

Complaints of backlogs at payment processing centers for initial payments 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

Poor/little coordination of information between the different departments and phases of the disability process

NOTE: These complaints refer to all phases of the SSD process including local office, Disability Determinations, Office of Hearings and Appeals, Payment Processing Centers and the Social Security main office in MD (800 number).

All these concerns were submitted in writing by myself, to the Commissioner’s staff as part of the New Approach program, and in previous testimonies to this committee, yet very few of them have even been addressed as part of the DSI.  While there is no acceptable excuse for why these incidents are occurring, it is of no surprise to me that they are, based on the current conditions under which the SSA functions.  I must take this time to remind you that we are not just nine digit SS numbers or case files, and I am sure as a result of very stressful working conditions, that it is very easy at times for SSA workers to forget that fact.  We are living, breathing, and due to our illnesses – very fragile human beings, whose survival in most cases, totally depends on these benefits.  Often we are treated like criminals on trial, or malingerers looking for a handout.  Social Security Disability (SSDI) is a Federal disability INSURANCE plan – not welfare - where money is taken out of your paycheck every week, yet you could face homelessness, bankruptcy and even death trying to get your benefits when you need them most.  Unfortunately, you may find yourself in a situation where you suddenly need to access this fund, then find it’s the most mismanaged, problematic Federal program there is.  The stories of abusive and rude behavior towards SSD/SSI claimants continue to increase.  There does not seem to be much oversight in this area, which is totally unacceptable.  The GAO and the SSA needs to monitor this problem more closely.  A greater effort must be made to treat all claimants with the utmost respect and dignity and when necessary SSA must remove offending employees immediately.  I ask that Congress/GAO create an independent oversight team to make sure these problems are corrected as soon as possible.

The SSA and GAO need to involve people such as myself who are directly affected by any changes to the SSDI/SSI program in any studies, surveys or committees to determine what changes would be in the best interest of the disability community.  Nobody knows better about the flaws in the system and possible solutions to the problems, then those who are forced to go through it and deal with the consequences when it does not function properly.  From my own personal experience, and those of so many others that I have come in contact with, the best approach is one that has the least amount of paperwork, the quickest processing times, the most communication with SS workers, and no need to have attorneys or the courts involved in the processing of claims.  This program should be as simple as a claim for any other kind of insurance such as unemployment, auto etc. because insurance is actually what these benefits are!  There is no need for it to be this burdensome, beaurocratic nightmare that it has turned into.  To achieve this goal we suggest that you also establish an independent commission, again including disability program clients, to provide an ongoing monitoring/assessment of customer service, cost, time savings, and functions of the Social Security Disability program.

At this point I feel that one of the best ways to illustrate the problems with the SSDI claims process is to relate my own experience with the program.  For the last 30 years of my life I contributed to the Social Security System as millions of Americans do every day.  I never expected to use those funds till I was old enough to retire, yet I was personally devastated by the SSA, losing everything I worked for because I became ill.  In December of 2001, I applied for Social Security Disability benefits which I assumed would be there to help me in my time of need.  I’d heard nothing but discouraging stories, but figured every case was different, and anyone with the list of illnesses that I had, and the documentation to prove it, would surely get the help they needed, yet I was sorely mistaken.  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 disability claims 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 that form of insurance again!  Going through that process and paperwork was very difficult and humiliating as well, and then to be denied any help, just added even more to my stress and misery. 

I was hoping beyond hope that I would soon get word that my disability claim was approved, but instead on 4/25/02, I got the incredible letter that my Social Security Disability claim had been denied!  I found out that it’s common knowledge on the streets and in legal circles that very few get approved the first time they apply.  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. 

I still couldn’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!  On 9/13/02, when I called the Office of Hearings and Appeals in Buffalo NY to check on my claim 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 longer since they were just starting to work on cases that were filed in November of 2001!  The receptionist expressed her sympathy for my cause and literally begged me to let others know (especially the government and media) 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 were only 50 employees handling hundreds of thousands of cases and they, along with all of us claimants critically need help now!

Congressional offices in many cases contact Social Security on behalf their constituents going through the SSD process, so they must be aware of the many problems that exist with the program.  I wrote to ALL my elected officials and as a registered voter myself, 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, that 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.  It was totally appalling and 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 SSDI/SSI applicants face.  The bi-partisan apathy in regards to this issue is not only unacceptable, but criminally negligent behavior, and Congress needs to be held responsible for it, create the legislation and get the funding needed to address this crisis.   We elected them, trusting that they would protect, serve, and be there for us in our time of need. 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.  

In March 2003 I called the hearings and appeals office again 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 several autoimmune disorders.  I also discovered that the DDS examiner purposely manipulated my medical information in order to deny my claim. Even though I filed my disability claim based on all the physical problems I have, the DDS examiner purposely wrote depression as a PRIMARY diagnosis for disability, instead of as 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 and the Inspector General’s office in MD and filed a formal willful misconduct complaint to him  against the Buffalo 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 staff 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 DDS person who actually knew how to do their job.  In two weeks my case was approved at the DDS level and then was selected randomly by computer (7 out of every 10 cases get chosen) for Federal review.  It then took another three weeks to be processed there. 

By this time, I had wiped out my life savings and lived off my pension from a previous employer which is totally gone now, due to the enormous wait for my claim to be processed properly. 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, I finally won my case by myself, with no lawyer representing me, exactly 1-1/2 years to the day from when I originally filed my claim.   Under SSD regulations 5 months of my retro pay was withheld for no good reason, money I surely could have used to help pay off debts incurred while waiting for approval of my benefits.  All the SSD retro pay I did received is gone now too and the benefits I do get are nowhere 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, even though all my illnesses are incurable and are getting progressively worse.  This is a total waste of time and money on the part of the SSA to review people with incurable, no hope for improvement conditions, such as mine.

Even after I was finally approved for benefits, since current Medicare program regulations discriminate against disabled Americans by 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.  Despite what you may hear, Social Security Disability benefits rarely cover the basis necessities of life.  The American dream has become the American nightmare for me, since day to day I don’t know how I’m going to survive without some miracle like winning the lottery.  I’m now doomed to spend what’s left of my days here on earth, living in poverty, in addition to all my medical concerns since I’m no longer able to work, and nobody in their right mind would willing choose this horrible existence. 

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, still not qualifying for any public assistance programs.  I personally hold accountable the SSA, the DDS Office in Buffalo NY, Congress and State legislators for their apathy in regards to the problems that this program has, for the mental, physical, emotional and financial destruction that this experience has cost me.  I have vowed to do whatever it takes for the rest of my life, to make sure that no other American citizen has to endure the hell that I continue to live with everyday as a result of having to file for SSDI/SSI benefits.  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 that disease and tragedy do not discriminate on the basis of age, race or sex.

America needs to wake up and take action - anyone including you, could be one step away from walking in my shoes at any moment!  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.  Americans saw when hurricane Katrina struck, how the poor and disabled were left to die in the streets when they needed help the most.  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, and the other disabled Americans in general, encounter their next experience with the Federal government as they apply for their SSDI/SSI benefits.  Also nothing is heard about the Veterans who are injured in the line of duty and have to go through this same scenario to get their benefits too.  There are cases of Veterans rated 100% disabled by the VA who get denied their Social Security Disability benefits and end up living in poverty on the streets.  Horrible treatment for those who protect and serve our country.  Keep in mind a country is only as strong as the citizens that live there, yet as you can now see, the Social Security Disability process preys on the weak, and decimates the disabled population even further.  The process that an applicant endures when filing for SS disability benefits, causes irreparable harm and has many serious side effects including financial and physical devastation, unbearable stress and anxiety, depression, and in some cases the depression is so severe that suicide seems to be the only option to get rid of the pain, of dealing with a system riddled with abuses against the disabled, already fragile citizens of this country.  It is a known medical fact that stress of any kind can be detrimental to a person’s health, and to subject a population whose health is already in jeopardy to the sorts of stress that this process can cause, further erodes a claimant’s health and is Federally sanctioned torture .  Based on my own personal experience, and from the horror stories I hear on a daily basis I can’t help but feel that the Social Security Disability program is purposely structured to be very complicated, confusing, and with as many obstacles as possible, in order to discourage and suck the life out of claimants, hoping that they give up or die in the application process, so that benefits do not have to be paid to them.  A sad commentary to say the least.

We the “Claimants, Customers, Stakeholders” are the people that the SSA and Congress is supposed to be serving and listed below are some of our concerns and proposals for reform:

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.  If a person cannot work due to their medical conditions – they CAN’T work no matter what their age, or how many degrees they have, yet this is a standard practice when deciding Social Security Disability determinations.  These non-disabling factors should be eliminated immediately as a factor in determining benefits eligibility.

The SSA “Bluebook” 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.  Also SSD's current 3 year earnings window calculation method fails to recognize slowly progressive conditions which force people to gradually work/earn less for periods longer than 3 years, thus those with such conditions never receive their 'healthy' earnings peak rate.

In her testimony before the Senate Finance Committee on 3/14/06 the Commissioner referred to an Electronic Disability Guide (eDG) which she states is accessible to the public.   To date that has not been made available to the public, all areas are flagged as restricted, and we request that it be made accessible to the public as soon as possible.

We want to see institution of a lost records fine, wherein if Social Security loses a claimants records/files an immediate $1000 fine must be paid to the claimant. 

Funding

The Commissioner has stated in the past: “Since funding is the fuel that drives our ability to meet the needs of the people who rely on our services, I must tell you that there are very real consequences when we have reduced resources. Under the current performance-based budgets, there is a certain amount of work that can be done for a certain amount of funding, and when our portfolio of traditional work and the new workloads I have described expands without funding, our effectiveness is jeopardized.”

We agree with the Commissioner that proper funding is crucial to the success of SSA programs and there are severe, very real consequences to claimants when SSA has reduced resources, yet it is my understanding that she has imposed a hiring reduction.  SSA has already experienced staffing cuts in 2006, and based on the President’s proposed budget, is expected to experience even more staffing cuts in 2007.  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 for us.   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 as the population ages, and we face very turbulent times ahead.  The idea that the Commissioner would use these resources she has been given, to create new levels of claims processing, that in reality will make the system tougher on claimants to access benefits, instead of properly staff the program and make it more claimant friendly is a travesty and waste of tax payer dollars.  We ask that Congress legislate to ensure that the Social Security trust fund should never be touched for anything else but to pay benefits to the people who are entitled to it, and that the SSA does not have to compete for appropriation funds.   We also call on Congress and the GAO to step in, and prevent the Commissioner’s very detrimental staffing cut from taking place.

Communication Between SSA And Its Customers Is Crucial/DCM/QDD

Increased contact with claimants throughout WHOLE disability claims process is crucial to the success of the program.  Currently there is virtually no communication with claimants after initial intake, written denial, approval, review notices or if by chance the claimant is able to get through to the 1-800 number to ask a question.  A welcome step in that direction is the Disability Claims Manager (DCM) pilot where the claimant is able interact on a regular basis in SSA field offices with the person who would be making the decision on their case.  If trained properly we believe that DCM staff could perform this role, and it is my understanding that in the pilot these managers processed claims faster and more accurately than the state DDS offices do now.  We are very pleased to see the Commissioner’s creation of the Quick Disability Determination Unit (QDD) process for the obviously disabled which is long overdue, especially for those who suffer from terminal illness, who currently in many cases, die before they get approved for benefits.  We must state that though, that it would better serve its clients if it were part of the SSA field office as well.  Also a claimant should be allowed to review all records in their case file at any time, during all phases of the SSDI/SSI process. Currently they are only allowed to review their file after a denial in the initial phase is issued.  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 the corrected or missing information before a determination is made.  This would eliminate many cases from having to advance to any hearing phase. 

Consolidation/Coordination – The Disability Common Sense Approach

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?  We must question why this common sense solution is not being instituted as part of the DSI.  We ask that SSA, Congress and the GAO to 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.  More Federal funding is necessary to continue to create a universal network between all outlets that handle SSDI/SSI cases so that claimant’s info is easily available to caseworkers handling claims no matter what level/stage they are at in the system.   Since eDib is not fully functional at this time, and even when it is, keeping as much of the disability process as possible in the SSA field offices would dramatically cut down on transfer of files and the number of missing file incidences, result in better tracking of claims status, and allow for greater ease in submitting ongoing updated medical evidence in order to prove a claim.  In addition,

all SSA forms and reports should be made available online for claimants, medical professionals, SSD caseworkers and attorneys, and be uniform throughout the system.  One universal form should be used by claimants, doctors, attorneys and SSD caseworkers, which will save time, create ease in tracking status, updating info and reduce duplication of paperwork.  Forms should be revised to be more comprehensive for evaluating a claimant’s disability and better coordinated with the SS Doctor’s Bluebook Listing of Impairments. 

5 Month Withholding/Waiting Period For Benefits

Remove 5 month waiting period for SSDI/SSI benefits.  Supposedly this law was instituted because it was felt by Congress that the majority of Americans have short and long term disability insurance through their employers.  In fact according to the Labor Department's National Compensation Survey released in March 2006, only 40% of U.S. employers offer short-term disability, and only 30% offer long-term disability.  We now live in a climate where employer sponsored benefits are in fact decreasing, while as the population ages the need for them is increasing.  There is absolutely no good reason for withholding these funds and it is basically robbery of 5 months of their hard earned benefits!  Also prime rate bank interest should be paid on all retro payments from first date of filing, due to claimants, as they are losing this as well while waiting for their benefits to be approved.  The amount of money withheld during this time could mean the very difference between a more secure future or financial ruin for a population who can no longer work and that will never be able to recoup that loss of back benefits that they are subjected to.   It could determine whether or not a person will have to file for State assistance in addition to their Federal benefits and then have to rely on two support programs rather than just one for the rest of their lives.  Now more than ever it is time for Congress to remove this additional hindrance to disabled Americans.  

Medicare Eligibilty/24 Month Waiting Period/Accelerated Benefits Trial/Mental Health Treatment Study/ HIV/AI Demonstrations,

The Commissioner’s proposed Accelerated Benefits trial ignored our request to get Congress to legislate removal of 24 month waiting period for ALL Social Security Disability recipients to get full Medicare coverage.  That needs to change and we ask this Committee to institute the necessary legislation to remove it as soon as possible.  Her suggestion to only allow claimant’s whose have medical conditions that are expected to improve within 2-3 years is blatant discrimination against the disabled citizens who need Medicare the most.  This proves a total lack of understanding on her part, of how crucial these benefits are to someone who is disabled and can no longer work.  Imposing this  waiting period, also forces many to have to file for Medicaid/Social Service programs who otherwise may not have needed these services if Medicare was provided immediately upon approval of disability benefits.   My organization agrees totally with the Medicare Rights Center, that coverage under all parts of Medicare must start immediately for them, upon disability date of eligibility.  As part of the Mental Health Treatment Study and HIV/AI Demonstrations, the Commissioner states that SSA will provide comprehensive health care to DI beneficiaries who have schizophrenia or affective disorders, HIV/AI disorders.  Again this should be extended to ALL SSDI claimants regardless of possible work outcome!

Claims Processing Times/Dire Needs/Compensation For Losses Incurred While Waiting For Benefits

We are calling for All SSD case decisions to be determined within three months maximum 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 the SSA will constitute a fine of $500 per week for every week over the six month period - payable to claimants in addition to their awarded benefit payments and due immediately along with their retro pay upon approval of their claim.  A dire needs case in the eyes of the SSA 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!  Many claimants are also unable 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 is not considered a dire need!  Worsening health doesn’t seem to be much of a factor in speeding up SSD claims either, as there are several reported cases of people who have died while waiting to get their benefits.  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 operates with such horrible turn around times.  As a result we are calling for Congress to legislate that the SSA will be held financially responsible to reimburse claimants for any loss of 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 claims, which may occur during or after (if there is failure to fully process claim within six months) the initial six month allotted processing period. 

Treating Physicians

All doctors should be required by law, before they receive their medical license, and it be made a part of their continuing education program to keep their license, to attend seminars provided free of charge by the SSA, in proper procedures for writing medical reports and filling out forms for Social Security Disability and SSD claimants.  Often claimants cannot get their doctors to fill out SSA forms due to time constraints and staffing problems or they have no access to any kind of medical care at all.  SSA field offices should also, when a person applies for disability benefits, provide at no charge to the claimant, a listing of free/low cost healthcare resources that they may need to utilize in order prove their disabilities.  While the SSA in such cases may order a claimant to go for an IME in these situations, they cannot adequately determine a claimants disability in one visit like a treating physician who see a claimant on a regular basis can.

Proper Weight of Treating Physician Reports/Evidence And IME/Consultative Exams

Too much weight at the initial time of filing, and throughout the claims process is put on the independent medical examiner’s and SS caseworker’s opinion of a claim.  The independent medical examiner, SS caseworker only sees you for a few minutes and has no idea how a patient’s medical problems affect their lives after only a brief visit with them.  The caseworker at the DDS office never sees a claimant.  The decisions should be based with priority given to the claimant’s own treating physicians opinions and medical records.  When evidence is lacking in that area, and SSD requires a medical exam, it should only be performed by board certified independent doctors who are specialists in the disabling condition that a claimant has (example – Rheumatologists for autoimmune disorders, Psychologists and Psychiatrists for mental disorders).  Currently this is often not the case.  Also independent medical exams requested by SSA should 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 should provide for transportation or travel expenses incurred for this travel by the claimant. 

Easy/Free Access For Patients To Copies Of Their Own Medical Records

All Americans should be entitled to easy access and FREE copies of their own medical records, including doctor’s notes (unless it could be proven that it is detrimental to their health) at all times.  This is crucial information for all citizens to have to ensure that they are receiving proper healthcare and a major factor when a person applies for Social Security Disability.  Often inaccuracies in these records are never caught, allowing incorrect information to be passed on from doctor to doctor over the years, and could even lead to serious misjudgments in  patient care based on bad information.

Removal Of Reconsideration Phase

NY State where I live, is one of the worst in the nation to file a claim for SSDI/SSI benefits, compared to the rest of the nation, especially since 9/11.  NY is one of ten test states where the reconsideration phase of the SS Disability claims process was eliminated, causing extraordinary wait times, up to several years in some cases, for claims to be processed  At the Buffalo NY DDS office where my own claim for benefits was processed, 48.6% of T2 initial cases, 57.2% of initial cases and 67% of concurrent initial cases were denied.  Yet over half of those claims were then approved at the Hearings and Appeals level in the time period between 6/25/05 – 9/00/05. With initial claims denial rates this high and no opportunity for reconsideration, it only stands to reason that claimants will request a hearing thus forcing them into the court system.  Currently in states where the reconsideration phase has been removed there is even a need to ship in ALJ’s from other states to help manage the court backlog problem.  Yet the SSA Commissioner, has ignored this problem occurring already in these 10 test states and has now passed regulations to remove the reconsideration phase for the whole country, which will continue to force thousands more into the already backlogged Federal Court system.  Why waste more Federal dollars on expanding removal of this phase when it has already been proven that it causes even more of a problem to both the claimants and the courts.

Use of Attorneys/ALJ’s In Claims Processing

The SSDI/SSI claims process should be set up so there is no need whatsoever for claimant paid legal representation when filing for benefits

Currently the program is set up to line the pockets of the legal system, since a claimant is often encouraged from the minute they apply for benefits to get a lawyer.  Why should you need to pay a lawyer to get benefits that you have earned?  Every effort should be made to set up the claims process so there is very little need for cases to advance to the hearing and appeal stage since that is where one of the major backlog and wait time exists.  It seems that this would create an incentive when work loads at DDS offices are especially high, to rubberstamp denials, moving them to the hearing phase, and pushing their workload into the already overloaded Federal court system, rather than take a little extra time to properly review the claim.  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.  I can’t even begin to tell you how many times I am told of people whose health is deteriorating, who are losing their homes and filing for bankruptcy because their attorneys do nothing to try and speed up their claims.  Many qualify for dire needs status or are eligible for pre-hearing/review on the record status in order to prevent these problems but are never told that by their attorneys, who sit back and do nothing but collect from a claimant’s retro check.  Claimants are told that there is a major backlog and since they are unaware of SS regulations they do not question this fraudulent behavior.  We view this as a criminal act, yet there is almost oversight on this problem.  Instead, from what I have seen in the Commissioner’s DSI plan, she is catering to the law community in much the same way that the pharmaceutical companies were catered to when the Medicare Part D plan was instituted.  Just as it has with the Medicare program, this adds a greater cost and processing time to the administration of the SSDI program and again adds a  financial burden for the disabled.  Instead the SSA 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.   

We are not in favor of any changes that would result in more hearings, lesser back payments or a greater reliance on attorneys for claimants to receive benefits.  The Commissioner has proposed that a record would be closed after an ALJ issues a decision and new/material evidence would only be allowed to be submitted under certain limited circumstances.  This is totally unacceptable, given that a great number of ALJ decisions are currently appealed due to rampant bias against claimants, fraudulent behavior and poor performance by the ALJ’s currently serving.  We have even heard stories of claimants who are being told by ALJ’s that they must give up years of back pay or the judge will not approve their disability claims, which is criminal behavior!  We are in favor of audio and/or videotaping of Social Security Disability ALJ hearings and during IME exams allowed at all times to avoid improper conduct by judges and doctors.  A copy of court transcript should automatically be provided to claimant or their representative within one month of hearing date FREE of charge.  We want to see the institution of a very strict code of conduct for Administrative Law Judges in determining cases and in the courtroom, with fines to be imposed for inappropriate conduct and payable to claimants.  We also ask that the GAO review the role of the ALJ in the processing of disability claims and their decision making which has often proven to be very harmful to claimants.  We suggest that the GAO and this Subcommittee look at the following report:

General Bias and Administrative Law Judges:  Is there a Remedy for Social Security Disability Claimants?

http://organizations.lawschool.cornell.edu/clr/90_3/Vendel_90_Cornell_Law_Review.pdf

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, SSD 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.

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.  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.  A cruel joke to say the least and it is no wonder that the disabled fear continuing disability reviews, 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.

How Backlogs In The SSDI/SSI Program Place An Increased Burden On The States

Due to the enormous wait times that applicants may endure while waiting for their SSDI/SSI claims to be processed, many are forced into poverty and have to apply for other state funded programs such as Medicaid, food stamps and cash assistance, who wouldn’t have needed them, if their disability claims were approved in a timely manner.  Another very stressful demeaning process to say the least. This causes an enormous burden across this nation, on those state Social Service programs.  This problem would be greatly reduced if  the Federal SSD/SSI program was fixed, and the states would definitely reap the benefits in the long run.  Also 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.  Disability claimants who file for state Social Services assistance while waiting to get SSI benefits in many states, have to pay back the state out of their meager disability benefits once approved, in most cases keeping them below the poverty level and forcing them to continue to use state funded services for the rest of their lives in addition to the Federal SSI program.  They are almost never able recover or better themselves, since they can no longer work, and now have to rely on two support programs instead of just one.  In all states there should be immediate approval for social services (food stamps, cash assistance, medical assistance, etc) benefits for SSD claimants that don’t have to be paid back to the states out of their SSD benefits once approved.  We are calling on the SSA, the GAO and the states to make it a priority to start tracking this connection and act swiftly to correct this problem.  Since states are being crushed under the increased Medicaid burden I am sure that this would do a great deal to alleviate that problem as well. 

Continuing Disability Reviews

We have heard that there is a proposal to give SSD recipients a limited amount of time to collect their benefits. We are very concerned with the changes that could take place.  Since every patient is different and their disabilities are as well, this type of “cookie cutter” approach is out of the question.  We especially feel that people with psychological injuries or illness would be a target for this type of action.  Some medical plans pay 80% for treatment of biological mental heath conditions, but currently Medicare only pays 50% for an appointment with a psychiatrist.  This often prohibits patients from getting proper treatment and comply with rules for continual care on disability.  The current disability review process in itself is very detrimental to a patient’s health.  Many people suffer from chronic conditions that have NO cures and over time these diseases grow progressively worse with no hope of recovery or 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 CDR’s should be considered 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. 

Unless everyone of the concerns/issues outlined above is addressed and resolved in a timely manner, the SSA, Congress and the State governments will continue to fail at what they were put in place to do – serve the people.  Most of us 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 we can no longer work.  Does that mean we are not valuable to our country, or give the government/society the right to ignore or even abuse us?  I think not!  We are your mothers, fathers, sisters, brothers, children, friends and acquaintances, and most people think that this could ever happen to them.  Remember that at any point in time you too could be facing our dilemma and contrary to what may be popular opinion, nobody willingly chooses this type of existence.  I only hope that I can live long enough to see you do what is right for all of us.  Since we can no longer work due to our disabilities, we are often considered "disposable" people by general and government standards.  In addition our cries and screams are often ignored, many preferring that we just shut up or die.  I am here to tell you those days are over now.  We are watching, we are waiting, we may be disabled but we vote!  Thank you for your time.

Please check out my website at: 

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