Living with Multiple Sclerosis

I was diagnosed with MS in 2003. Prior to being stricken with the disease, I owned a thriving advertising agency for 17 years, and worked for some prominent companies. Ironically, one of my clients was a leading provider of interferon drug therapies for the treatment of multiple sclerosis So, I was intimately familiar with the devastating effects of the disease long before contracting it myself.

With the onset of the disease, I went from working 75-80 hours a week to having to shut down my ad agency. At that time, my symptoms were so severe (loss of muscular strength and coordination, double vision, and cognitive/memory deficits) that I could no longer work. Fortunately, during the past couple of years, my condition has been relatively stable. As a result of my own experiences and background, I decided to commit myself to reforming our nation’s social security and disability programs as they relate to severe chronic illnesses, such as MS.

So last February, I wrote a federal petition and began to contact key organizations that represent chronic illness patients, as well as congressional legislators, Social Security personnel, various media sources, and well-known individuals who also battle MS and other serious medical conditions.

As a result of my efforts during the past three months, over 2,000 MS patients, physicians, employees of pharmaceutical companies, educators, chronic illness organization leaders, television actors and celebrities, and other concerned citizens have begun to rally around this effort. The petition initiative has also been featured during the past month in several magazines, newspapers and websites, including those of the Multiple Sclerosis Foundation, the Accelerated Cure Project, the Dystonia Medical Research Foundation, Medical News Today, Access Press, New Mobility Magazine, and most recently, the Montel Williams MS Foundation.

When you read the endorsements, it becomes apparent that there is a common thread; the desire among those afflicted with MS and other serious chronic disorders to continue to work and contribute to society as they’re able — while gaining the recognition of our lawmakers that the unpredictable nature of chronic illness needs to be more adequately addressed.

The outpouring of support of these efforts as the issue has begun to gain momentum is very encouraging. One woman who has been confined to a wheel chair for nearly a decade and who has also been unjustly and repeatedly denied SSDI/SSI assistance has single-handedly gathered several hundred signatures during the past couple of weeks alone. A recently retired federal employee has also volunteered a day a week of his time to further the initiative through his political and administrative contacts and experience. Leaders of various disability advocacy organizations have also accepted my invitation to serve on a coalition panel that I am establishing that will officially present the petition to congress once the signature goal has been reached.

Recently, I asked the 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.

These statistics 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.” This 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 in the process of, or contemplating an application for permanent disability status 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. 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. While expedited reinstatement of benefits is available within the first five years of resuming employment, an individual who suffers a debilitating relapse after the five-year period must reapply for benefits. For those with totally unpredictable chronic disorders, such as MS, that five-year limitation is unfairly restrictive.

In addressing the current difficulties in qualifying for permanent disability benefits, I am proposing that temporary disability benefits be granted during times when they’re actually needed.

I am analyzing data provided by the SSA relevant to those on permanent disability who participate in the Ticket to Work Program. If that program, as limited as it may be, shows that there are savings of federal expenditures in benefits payouts, and reduces federally sponsored health care costs, then a strong case can be made that “temporary” disability benefits are not only sorely needed, but result in long-term savings and fiscal responsibility. And that is the focus of this reform initiative.

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 voiced support for this reform 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 own, by clicking on the following link.

http://www.acceleratedcure.org/petition/

If you’re interested in reading more about the initiative, here’s the link to Montel William’s website which has just featured the effort as the lead story.

http://www.montelms.org/NewsEvents.php

Thank you, in advance, for adding your own endorsement.

Bob
Petition Author
Diagnosed with MS in 2003