Advocacy Update from The ALS Association National Office
July 24, 2003
The ALS Association is very pleased to share with you today that Social
Security Commissioner Jo Anne Barnhart announced the inclusion of a
presumptive eligibility ruling for persons with ALS. This is a monumental
breakthrough for ALS patients, as they will automatically gain disability
status at the time of their diagnosis from their primary neurologist. This
disability status will make receiving disability benefits far less tedious
and frustrating. 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 Office of Management and Budget (OMB) must give its final approval of
this rule making before it officially becomes law. While the OMB review
process can take as long as 90 days, we are hopeful that this new ruling
will be approved in a shorter period. The Advocacy Department will
continue to monitor this process and will give you an update as soon as
OMB gives its final approval of this ruling.
Thank you to the hundreds of ALSA Advocates who reached out to their
Members of Congress during National ALS Advocacy Day. Due to your efforts,
82 Members of Congress sent a letter to Commissioner Barnhart requesting
this important change. Please thank your Member of Congress for their
assistance.
A special thanks also goes to Mr. and Mrs. John Hunter from ALSA?s
Northeast Ohio Chapter and 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 meet with Members of Congress
from the Ohio Delegation and made the claim for presumptive eligibility
for ALS patients nationwide.
Please remember, in order to get up-to-date information about our advocacy
program and for more information on how to get involved, visit 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.