"Fighting For Disability Rights in America: Win, Lose...or Die Trying"
an editorial by Bob Guidara
Edited versions were published recently by Access Press (a disability newspaper in Minnesota), as well as in New Mobility Magazine. My alma mater, Salem State College (Massachusetts) will also be running a major story on my social security reform initiative in the spring 2008 issue of the college's quarterly magazine, Salem Statements, which has a circulation of over 40,000.
On August 23, 2007, after waiting nearly two years to present my case before a social security administrative judge, I was awarded full retroactive SSDI benefits. Am I happy that I won the battle? Yes and No.
I am among the 400,000 U.S. citizens who battle the often-debilitating effects of multiple sclerosis. MS is an autoimmune disorder in which antibodies attack cells within one’s own brain and/or other parts of the central nervous system. Depending upon the frequency and location of these attacks, MS patients can suffer various degrees of physical, intellectual and emotional deficiencies, ranging from temporary impairment to permanent disability.
The cause of MS is unknown. Attacks occur without warning, leaving victims with a variety of symptoms ranging from loss of feeling, strength and muscle coordination, to visual impairment, digestive disorders, cognitive dysfunction, emotional imbalance, extreme fatigue, severe pain and many other problems. Sometimes these symptoms improve over time as the body attempts to heal itself. In other instances, symptoms worsen and persist indefinitely.
In the earlier stages of the disease, many individuals can function at near normal levels during periods of remission while being unable to function normally and care for themselves during and following major attacks. This is called "relapsing-remitting" multiple sclerosis. I experienced my first major MS attack in late 2000, and was officially diagnosed with relapsing-remitting MS in 2003 at the age of 45.
Prior to being stricken with the disease, I owned a thriving advertising agency and worked 60-80 hours a week for 17 years in pursuit of the American dream.
I earned a good living, paid my taxes, and provided 100% health insurance coverage for myself as well as my employees. Then, unexpectedly, I awoke one day to face my first of several major neurological attacks from MS that would change my life and force me to close down my business.
After living off my savings for several years following the onset of MS, I finally swallowed my pride and applied for the disability benefits to which every tax paying citizen is supposed to be entitled.
Following is a brief summary of my personal experience with the horrors of our nation’s social security system and why I am spearheading a grassroots movement to change it.
I made a trip to my local Social Security office and began the application process. At that time, even filling out the application was an overwhelming task. I answered the questions the best I could. As requested, I also provided the Social Security Administration (SSA) with full medical records documenting the progression of my condition and detailing my recent history of numerous visits to my doctor, MRIs, hospitalizations, and treatments during attacks. Several weeks later, I was interviewed over the telephone by a social security case worker. Months later, I received my first denial letter accompanied by instructions on how to file an appeal.
After competing the appeal forms and explaining why I believed I was being denied in error, I was examined by a neurologist assigned by the SSA. Months after the examination, I again received a denial letter even though, as I discovered later, the report from the physician hired by SSA to examine me clearly stated that I was, in fact disabled and unable to resume working.
So more than a year after my initial application and two erroneous denial letters later, I opened the yellow pages and hired an attorney. According to my attorney (a former judge who presided over Social Security claims cases), my situation is not uncommon.
In my own research, I asked Social Security Administration to document disability benefits approval rates comparing MS patients with the entire applicant population. While the initial allowance rate for MS patients who applied for SSDI and/or SSI in 2006 was higher than the percentage for all impairments combined (48.1% and 34.9%, respectively), over half of the more than 13,000 MS patients were denied upon initial application.
Staggering statistics like these have brought this critical issue to the attention of the mainstream media. On May 1, 2007, the New York Times published an editorial entitled, "To The Temporarily Able-Bodied." The editorial states that our nation's social security disability programs are "unacceptable and inhumane." It goes on to say... "Processing delays, mounting since 2000, have left more than one million applicants languishing without help, some for years."
Here are a few additional excerpts worth noting...
"The most acute bottlenecks are at the appeals level, where the average processing time is now 515 days -- compared with 274 days in 2000. Such delays are especially pernicious because slightly more than one-quarter of all approved claims are awarded after an appeal hearing, and nearly two-thirds of people who appeal will ultimately prevail. Without the benefits they are entitled to, far too many applicants get sicker and experience severe economic hardship, including foreclosures and even homelessness. Some applicants die before their appeals are heard."
"Disability claims have risen to 2.5 million in 2006 from 1.3 million in 2000, driven in part by the aging of the population."
"When it comes to helping disabled workers -- as with so many other duties of government -- recent congresses have not been willing to pay for service that is prompt, professional and compassionate."
Even though the Social Security Administration recognizes MS as a potentially qualifying disability, the current guidelines that direct case workers how to recognize the often-hidden effects of the disease haven't been revised in decades. As a result, many individuals who should have been approved in a timely manner have had to endure lengthy and often-costly appeals and court hearings before they eventually gain approval, if at all.
To help overcome these burdens, the National Multiple Sclerosis Society recently published an article in their newsletter, InsideMS, entitled "Loosening the SSDI Knots."
The article summarizes the Society's many recent efforts to revise and expedite approval guidelines and to educate SSA field offices on how to better recognize hidden disabilities. Anyone who is considering filing for SSI or SSI benefits will find the article quite educational and useful.
Yet, streamlining the process for disability benefits approval represents only part of the problem, since permanent disability status in its current form offers inadequate incentives for chronic illness patients who are in remission to return to the work force and re-contribute to the ongoing solvency of the program.
Under current law, SSDI/SSI recipients are allowed a 60-month "trial period" under which they can attempt to return to work and receive "expedited reinstatement" of their benefits should their condition worsen. However, this 60-month window is unfairly restrictive for those battling severe chronically debilitating illnesses.
The reality is that many people on permanent disability would welcome the opportunity to return to work if they knew they wouldn't have to go through the several-year approval process all over again the next time they got seriously ill.
Due to my own experience with the inherent problems with the disability application and approval process, I decided to spearhead a grassroots movement to change the way our nation's disability programs work for victims of MS and other chronically disabling illnesses. In addressing the current difficulties in qualifying for permanent disability benefits, I wrote a petition to Congress requesting that temporary benefits be granted during times when they're actually needed.
To date, the petition has been endorsed and/or promoted by The Accelerated Cure Project, The Multiple Sclerosis Foundation, The Montel Williams MS Foundation, The Dystonia Medical Research Foundation, The United Spinal Association and several other disability groups, magazines, newspapers and websites. Over 4,000 people have signed the online and "paper" versions of the petition.
The goal of the initiative is to prompt legislative changes to our nation's social security and disability programs to address the needs of U.S. citizens who suffer from the totally unpredictable and often debilitating effects of multiple sclerosis and other serious chronic illnesses.
I am working with several major advocacy groups to draft specific language for a legislative proposal to revise disability guidelines and remove the 60-month limitation for expedited reinstatement of benefits for those on permanent disability who desire to return to work. I am confident that the result would benefit the disabled community (and American taxpayers) in several ways...
It would motivate those on permanent disability to attempt to return to work as they are able without fear of jeopardizing benefits should they need to rely on them again in the future. Additionally, it would likely have the effect of helping to accelerate the initial approval process since SSA case workers and application reviewers would realize that chronic illness sufferers approved for permanent disability would have greater incentive to attempt to return to work as their condition permits during periods of remission. By encouraging resumed independence, the government would realize associated savings in SSDI/SSI benefits payouts, not to mention associated Medicare and other government-sponsored long-term health care costs.
In effect, our nation's disability programs would evolve from a strict "permanent" system to one that includes more flexible and highly appropriate "intermittent, as-needed" benefits for those with serious medically verifiable chronic conditions.
If the concept of temporary, as-needed disability benefits seems too much of a radical idea to be considered, consider this.
As reported in the Washington Post on April 17, 2007, the Office of Personnel Management recently sent proposals to Congress that would authorize federal agencies to rehire retired employees, and allow them to retain their pension and draw a full salary. Is it not far more radical that these former federal employees would be allowed to work up to half as many hours as they did before they retired without having their pension income reduced by one cent?
So, while our lawmakers continue to consider and pass legislation that ensures their own financial well-being and security, we, who have paid into a social security system that was supposed to be there for us if and when we needed it, find ourselves forgotten and often abandoned.
The beauty of this country is that we, as American citizens, have the ability to band together and effect necessary and positive change.
I'll end this article with insight from one of the individuals who signed the petition last month.
"The measure of any civilization is how it cares for their needy and infirm; it's time for Congress to step up to the plate and reflect the great heart of this country's people."
You can read hundreds of moving comments like this, and add your voice of support by logging onto http://www.acceleratedcure.org/petition/
Bob Guidara
Petition Author
ddremote@aol.com
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