When you decide it’s time to jump off the work train, there are a couple of government safety nets ready to catch you. Recent changes have made these nets a little stronger for people with ALS.
Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) both offer benefits to people of any age with ALS (see “Definitions”). But in the past, applicants with ALS had to show certain disabling signs before they were approved for benefits.
Under new regulations, applicants with ALS only need a formal medical diagnosis of the disease in order to be considered “disabled” by government standards.
Although most SSDI applicants with ALS were approved the first time they applied (about 96 percent in 2002), some were denied and had to undergo the time-consuming process of appeal. And time is a precious commodity to people with ALS.
This situation was dramatized by the late John Hunter, a Litchfield, Ohio, man with ALS who crusaded for changes in the law after his initial SSDI application was turned down because he was still walking.
Last summer the Social Security Administration (SSA) revised its regulations to “simplify and expedite” the application process for people with ALS. For those applying for SSDI, this means the shortest possible wait for benefits. (It generally takes 60 to 90 days to process SSDI applications, and about five months to get a check.)
The old regulations required applicants with ALS to have “significant bulbar signs” (i.e., difficulty in chewing, swallowing and speaking) or “disorganization of motor function” (inability to walk effectively or use both arms). Under the new regulations, a valid diagnosis of ALS is sufficient to prove disability, regardless of how impaired the applicant is at the time.
The other requirements to qualify for SSDI and SSI still apply (see “Definitions”).
For SSI applicants, the new regulations mean that an ALS diagnosis gives them a “presumptive disability.” They can immediately receive monthly SSI payments for up to six months while their claims are being processed. SSDI applicants who also qualify for SSI can receive SSI checks while waiting to get an SSDI check.
If a claim is rejected for some reason, applicants don’t have to pay back the SSI money they’ve received.
This regulation change isn’t the first time SSA has recognized the need for speed for people with ALS. In 2000, Congress eliminated the Medicare waiting period for SSDI recipients with ALS, allowing them to receive Medicare coverage immediately rather than waiting two years as most other SSDI beneficiaries must do.
What you need to apply
The new regulations, listed in the Social Security “Blue Book” under Part III, Listing of Impairments (Section 11.00, Neurological), require applicants to submit “a clinically appropriate medical history, neurological findings consistent with the diagnosis of ALS, and the results of any electrophysiological and neuroimaging testing.”
Current tests used to diagnose ALS (and rule out other diseases) include EMG (electromyography) and nerve conduction studies, blood tests, and an MRI of the brain and/or spinal cord. A copy of the neurologist’s notes also is needed. Documents submitted to SSDI must be originals or certified by the doctor’s office.
For more info
SSA recommends applying for disability benefits as soon as you’re eligible. Start the process by learning more about the basic requirements and all the documents needed to apply. It’s possible your spouse and minor children also may qualify for benefits.
After learning the basics, write down any questions, then get in touch with an SSA representative by phone or in person. You may start the process before you have all your documents gathered.
Application also can be made online at the SSA Web site.
Two free SSA publications outline the basics in clear, supportive language: “Understanding the Benefits,” Pub. No. 05-10024; and “Disability Benefits,” Pub. No. 05-10029.
These are available at www.ssa.gov, at your local SSA office or by calling (800) 772-1213.