Fighting for disability rights in America: Win, lose...or die trying.
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.
Prior to being stricken with MS, 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 and my employees. Then, without warning, I awoke one day to face my first of several major neurological attacks that would change my life and force me to close down my business.
After living off my savings for the next several years, I swallowed my pride and applied for the disability benefits to which every disabled tax payer is entitled. Following is a summary of my personal experience with the process 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 a daunting task. I answered the questions the best I could. I also provided full medical records documenting the progression of my condition and detailing my recent history of numerous visits to doctors, 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 completing the appeal forms and explaining why I believed I was being denied in error, I was examined by a doctor 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 denials later, I 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 learned that 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."
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. Plus, 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. While 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, this window is unfairly restrictive for those battling severe chronic illnesses.
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 individuals have signed either the online version, or the "paper" version.
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.
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.
"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 own voice of support by logging onto