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ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-608-663-0920.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
5808 Dawley Drive
Fitchburg, WI 53711‑7209

ALS Worldwide
January 19, 2015

Social Services Support

While many ALS patients find it daunting to navigate Social Security, the good news is that recent developments have made it faster and easier to receive disability benefits. The Compassionate Allowances program launched in 2008, enables patients with 50 diseases and conditions—including ALS—to quality for benefits based on minimal objective medical information, and to receive those benefits quickly. Today, the list of conditions numbers over 100. Retired Social Security Commissioner Michael Astrue's dedication to the initiative has earned him a humanitarian award and the attention of President Obama. At this time, Carolyn Colvin is Acting Commissioner awaiting Senate confirmation.

The Social Security Administration (SSA) pays monthly cash benefits to people who are unable to work for a year or more due to a disability. Generally, to qualify for benefits, you must first have worked in jobs covered by Social Security. Then you must have a medical condition that meets the SSA's disability definition. The Benefit Eligibiity Screening Tool helps identify which benefits you might be eligible for and provides information about how to qualify and apply. 

You may also be entitled to Supplemental Security Income (SSI) which is a Federal income Supplement Program funded by general tax revenues (not Social Security taxes). This program pays benefits to disabled adults and children with limited income and resources to meet the basic needs of food, clothing and shelter. If you receive SSI, you may also get Medicaid, which helps pay doctor and medical bills. Consult your local welfare or medical assistance office for more information about Medicaid, or learn more about Expedited Payments online.

Medicare is financed by a portion of the payroll taxes paid by workers and their employers, as well as monthly premiums deducted from Social Security checks. Applications can be submitted online. The Medicare system has four parts. Part A, Hospital Insurance helps pay for inpatient care in a hospital or skilled nursing facility (following a hospital stay), as well as some home health care and hospice care. Part B, Medical Insurance helps pay for doctors’ services and many other medical services and supplies that are not covered by hospital insurance. Part C, Medical Advantage includes health plans offered by private companies and approved by Medicare. Part D, Prescription Drug Coverage helps pay for doctor-prescribed medications.

If you have low income and few resources, your state may pay your Medicare premiums (and, in some cases, other Medicare expenses such as deductibles and coinsurance). To find out if you qualify, contact your state or local welfare office or Medicaid agency. For more information, contact Medicare 1-800-MEDICARE (1-800-633-4227).

If you have any questions or would like to discuss our viewpoints regarding this information, please email us at [email protected]