The battle for life and limb for veterans with Lou Gehrig’s disease

The very first time I sat at the bedside of a military veteran with Lou Gehrig’s Disease, or Amyotrophic Lateral Sclerosis (ALS), it gave me a frightening glimpse into the sobering frailty of the human condition.

This painstakingly life-draining affliction slowly paralyzes the limbs, vocal chords, lungs and other essential bodily functions. It can render its victim completely helpless for months or even years before mercifully ending his or her life.

{mosads}Worst yet, the disease is two times more likely to affect military veterans than the general population.

Although research has not been able to pinpoint the precise reason that military veterans are at such a higher risk for ALS, because the correlation exists, in 2008, VA took a step in the right direction by establishing presumptive benefits for veterans afflicted with the condition.   

Despite ALS being a claimable, service-connected condition for the last ten years, for the thousands of veterans whose quality of life hinges on access to monetary and clinical resources delivered through the Department of Veterans Affairs (VA) claims adjudication process, the good news unfortunately ends there.

Although many were appalled at the publication of a Nov. 18, VA Office of Inspector General report entitled “Accuracy of Claims Involving Service-Connected Amyotrophic Lateral Sclerosis,” which found that VA staff made significant errors in a high percentage of ALS claims, VA’s inability to competently address the needs of many of our most disabled veterans with complex disabilities, such as ALS, has been going on for many years.  

Attention to getting these claims right must remain atop Congress’ priority list as we transition toward the near year. Simply put: we can and we must do better.

Five years ago, when asked by Rep. Jon Runyan (R-N.J.), then-chairman of the House Veterans Affairs Subcommittee on Disability Assistance and Memorial Affairs, to speak on complex VA disability claims during a Dec. 4, 2013 hearing, I used the opportunity to speak up for one particular San Diego-area veteran with ALS.

A decision on his disability claim had been delayed because he needed to submit to a Compensation and Pension exam in order for the assigned VA rating specialist to determine the extent of his need for attendant care. VA continued to insist on the examination, despite the fact that VA’s “veteran-friendly” adjudication procedures permit the submission of non-medical evidence, such as statements from family and caregivers describing the condition and despite the fact the veteran was in hospice at the time and would likely die before his claim could be decided — which is exactly what happened.

To add insult to injury, every similar anecdote I would hear was a new data point on a growing trend line where ALS cases were concerned. I made it my mission to ensure that those with the power to fix it would hear these stories and feel compelled by their humanity to do so.

However, any hope that I and other vocal advocates had in fixing the VA claims adjudication process for veterans with ALS has, thus far, apparently proven to be a delusion of adequacy.

Fast forward almost five years to the date of that hearing and the publication of the most recent VA OIG report and, unfortunately, very little progress was made.

As noted above, the report revealed that a high percentage of ALS claims had significant errors. Specifically, that almost half of all ALS veterans’ cases completed during a six-month period had erroneous decisions, many involving improper and underpayments.

In other words, some of the most vulnerable veterans in the country are being unnecessarily subjected to extreme financial hardship and the problem is hiding in plain sight.

What may not be obvious to those who are lucky enough not to suffer from ALS, is the downstream effects these errors have: limits on access to life-sustaining prosthetics and adaptive equipment; additional undue burdens on caregivers; missed opportunities to enjoy some semblance of good quality of life; and the wrongful delayed receipt or denial of benefits to dependents and survivors once the veteran dies from the disease.

Unless and until the VA rating specialists, lane coaches, decision review officers and others who adjudicate ALS claims are deliberate in the collective aim to do better, caring for those “who have borne the battle” and their families will be nothing more than tired rhetoric that all too often serves as a poor substitute for action.

A mistake repeated more than once is a decision and no truer words apply in this case. The improper adjudication of claims that involve this deadly, fast moving disease is unacceptable. This is precisely why new rules were implemented in 2008 and 2012 that were supposed to make the adjudication of ALS claims easier, faster and more accurate.

On balance, many veterans with ALS have been well served by diligent, competent VA claims rating specialists who had properly applied the new standards. But it appears the systemwide adherence to an imperfect process has overtaken the pursuit of accurate and timely decisions for far too long and in far too many cases, according to the OIG report.

For many veterans, the award of service-connected compensation for complex disabilities like ALS is literally a matter of life and death. It is time for meaningful action on the part of decision makers in the Department of Veterans Affairs that reflects such urgency.

Sherman Gillums Jr. is a U.S. Marine Corps veteran and serves as AMVETS chief advocacy officer. Find him on Twitter: @SGillums.