News from ALSA
August 28, 2003

The ALS Association is very pleased to share with you that the Social Security Administration announced today that the inclusion of a presumptive eligibility ruling for persons with ALS has been approved by the Office of Management and Budget (OMB). The rulemaking is effective today and can be found in today's Federal Register listing. This new regulation is included as amendments to Parts 404 and 416 under Title 20 of the Code of Federal Regulations.

As described in our previous Advocacy Update in July, this disability status will make receiving disability benefits far less tedious and frustrating for ALS patients. In fact, it can help an ALS patient receive disability benefits months, and even years, before patients might have received benefits prior to this ruling. Upon gaining disability status, persons with ALS must still wait the 5-month period before they will receive their benefits.

The Advocacy Department is currently working with the Social Security Administration, as well as The ALS Association's Patient Services Department, to develop a Q&A information sheet about how this new rulemaking will impact ALS patients and their application process for receiving disability benefits. Once completed, this information will be shared with the ALS community to assist patients and families with the disability application process.

This rulemaking could not have happened if not for the tireless advocacy efforts by the hundreds of ALS Advocates who reached out to their Members of Congress during the National ALS Advocacy Day, as well as the efforts of those who wrote letters to their Members of Congress asking for their support of this rulemaking. Due to all of your requests, 82 Members of Congress sent a letter to Commissioner Barnhart requesting this important change.

Again, a special thanks goes to Mr. and Mrs. John Hunter from our Northeast Ohio Chapter, and to Duane Pohlman, chief investigative reporter for Channel 5 News in Cleveland, OH. This effort began by their initiative when John Hunter applied for but was denied disability benefits by his local Social Security Office because the office said that Mr. Hunter "could still walk with a normal gait." This outraged the Hunters and with the assistance of Mr. Pohlman, made the story public. They then traveled to Washington, D.C. last February, and we met with Members of Congress from the Ohio Delegation and made the claim for presumptive eligibility for ALS patients nationwide.

For more information, please read the attached Adobe Acrobat file from the Federal Register website.

Please remember, in order to get up-to-date information about our advocacy program and for more information on how to get involved, you can go to The ALS Association's Advocacy Department webpage at: http://www.alsa.org/serving/adv_update.cfm.

If you have any questions, please contact Ted Burnes toll-free at: 877-444-2572 or via e-mail at: ted@alsa-national.org.