Speedier Social Security Benefits for Four Muscle Diseases

by Annie Kennedy on January 1, 2009 - 3:24pm

QUEST Vol. 16, No. 1
Annie Kennedy

Applying for Social Security benefits can be tedious and frustrating, often resulting in the first application being denied and initiating a long appeal process.

In an effort to reduce the time between application and approval for people with rapidly and severely debilitating conditions, the Social Security Administration (SSA) has launched the Compassionate Allowances initiative. The program fast-tracks the disability determination process for certain applicants for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI).

The Compassionate Allowances program covers a list of diseases that have been designated by SSA as catastrophic enough that applicants always qualify for disability benefits, even if they appear physically strong and are still walking on the day they apply. It’s hoped the program will reduce wait times for those applicants to a matter of days.

Fifty diseases are eligible for the expedited approval process, four of which are covered under MDA’s program: amyotrophic lateral sclerosis (ALS), Friedreich’s ataxia (FA), infantile-onset Pompe disease and type I spinal muscular atrophy (SMA).

How does it work?

The program alleviates the burden of proof often faced when applying for disability. In the past, an SSA adjudicator would say something like, “Friedreich’s what? I’ve never heard of it!” — followed by months or years of paperwork and physician documentation before the applicant received disability benefits.

Under Compassionate Allowances, the burden of proof is removed for applicants with a designated disease. People now can say, “I have [disease name] — it’s on the Compassionate Allowances list.” This should reduce the number of questions asked during the application process, such as, “how many steps can you walk?”

Being on the Compassionate Allowances list doesn’t guarantee approval of your application; nor does it change the amount of time you must wait between being approved for Social Security benefits and becoming eligible for Medicare — at present that gap is two years, except for a very few selected diseases, including ALS.

If you’re not on the list

Over time, more diseases will be added to the Compassionate Allowances list.

Meanwhile, note that a diagnosis of “muscular dystrophy” and “muscular atrophy” already fall within an SSA category known as a “presumptive disability,” meaning you may be eligible for temporary benefits to tide you over during the lengthy review process. 

The “presumptive disability” program covers only SSI applicants. It allows Social Security to pay up to six months of benefits to eligible applicants who are awaiting an SSA decision.  (Again, the designation is not a guarantee that an application will be approved.) 

What’s next?

The Compassionate Allowances initiative is the most recent in a series of proactive measures by SSA to make the benefits application process more accessible to the public. MDA will continue to work with SSA and the advocacy community to further awareness of the needs of our community.

A complete list of the first 50 diseases, as well as more information about the SSA initiative, can be found at Compassionate Allowances, or call (800) 772-1213 for automated service.

The bottom line: If you’ve been diagnosed with one of the four disorders listed above and are beginning the application process for Social Security benefits, be sure to mention the Compassionate Allowances list in order to speed up the time it takes to receive a decision.

Annie Kennedy is MDA’s vice president for Advocacy.

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