A doctor's diagnosis of "highly suspicious for ALS" is all it takes to be instantly approved for Social Security disability payments. Then the SSA has six months to do its usual months-long inquiry to establish the facts and rescind approval if they decide you don't have ALS.
A doctor's note stating that he is unable to travel should be good, assuming you have his ID.
FIRST, call the SSA's 800 number to establish the case. Then make a "telephone appointment" so an adjudicator can call you for a 30-minute interview.
FINALLY, hand-deliver these original documents: the social security cards and birth certificates for everyone in the family, your marriage certificate, and your checkbook. They'll want the names and addresses and phone numbers of his previous employers for the last 5 years.
We had a letter from the neurologist that says "permanently and totally disabled and unable to work" for the remainder of his life due to ALS.
You probably already know this, but anyway:
The SSA considers ALS to be a “Compassionate Allowance,” meaning that the disease is so severe that you automatically are considered disabled. You get SSDI as soon as the diagnosis is confirmed.
An “allegation” of ALS might be sufficient:
Code of Federal Regulations Title 20, Section 416.934 says there are nine conditions (including ALS) that can be approved for SSDI without any medical evidence.
BE SURE TO ASK for a Quick Disability Determination. The guy at SSA just enters you into his computer, and the computer approves you for SSDI. ALS is in the SSA Blue Book, condition number 11.10.
“anyone with ALS established by clinical and laboratory findings as described in 11.00G will be found disabled. For purposes of meeting the listing, documentation of the diagnosis must be by generally accepted methods consistent with the prevailing state of medical knowledge and clinical practice.
The evidence should include documentation of a clinically appropriate medical history, neurological findings consistent with the diagnosis of ALS, and the results of any electrophysiological and neuroimaging testing. A negative test result will not preclude a diagnosis of ALS if other clinical findings are present that are consistent with ALS and other potential disorders have been ruled out.”
We brought reports from the blood lab, spinal and brain MRIs, and an EMG tape with the doctor's notes. Overkill.
Plus, there’s no waiting for Medicare:
Public Law 106-554 amends section 226 of the Social Security Act to waive the 24-month waiting period for Medicare coverage for disabled individuals medically determined to have Amyotrophic Lateral Sclerosis.
