Thursday, August 4, 2016

ALS Disability Insurance Access Act

Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease) is a disorder that involves the death of neurons that control voluntary muscles, according to the National Institute of Neurological Disorders and Stroke. The disease progresses rapidly, causing a number of serious health problems, such as losing the ability to speak, swallow or breath on one’s own. There is currently no known cure, but there is a treatment available that can improve the quality and longevity of life.

As you might imagine, those who are diagnosed require serious medical attention which is costly, to say the least. While people with ALS do in fact qualify for Social Security Disability Insurance (SSDI), there is a relatively long waiting period to receive benefits they desperately need. Which is why several lawmakers from both sides of the aisle have been fighting to shorten or end SSDI approval waiting periods for ALS patients.

In May, legislation was introduced in Congress that would waive the current 5-month waiting period that ALS patients are subject to before receiving SSDI benefits, ALS News Today reports. The ALS Disability Insurance Access Act would build on former actions taken in Congress 16 years ago.

Back in 2000, Congress passed legislation to waive the 24-month Medicare waiting period for ALS patients, according to the article. However, ALS patients still must wait five months before they can start receiving both SSDI and Medicare benefits. It goes without saying that a life threatening illness puts a heavy toll on the family and can drain saving accounts. The faster an ALS patient begins receiving benefits, the better.

“Congress originally justified the five-month waiting period by saying it allows time for temporary conditions to reverse. Unfortunately, that’s not currently possible for someone with ALS. In fact, nearly 50 percent of people with ALS will die within 16 months of diagnosis,” said Barb Newhouse, the ALS Association’s president and chief executive officer. 

Efforts continue around the world to raise awareness and funds for the development of advanced treatments, and hopefully one day, a cure. The life expectancy after diagnosis is a mere three to four years and the only approved treatment available, riluzole, can extend life by a modest two to three months, BMJ reports.

“People with ALS, who have lost the ability to walk, talk and even breathe on their own and who currently do not have an effective treatment option, should not be forced to wait to receive benefits they deserve and have paid for,” Newhouse, said in a press release. “We applaud Senator Whitehouse and Representatives Moulton and King for their leadership in fighting for people with ALS and working to ensure they have access to the vital health and disability benefits that are so essential to everyone living with ALS and their families.” 

Stephanie Merritt Driscoll is an attorney in Southern California who focuses her practice as a Social Security Disability advocate.

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