Skip Navigation

Government Benefits

Making Sense of Government Benefits

By Holly Doe, RN

Understanding & applying for government benefits can be confusing and frustrating to say the least. We at the ALS clinic encourage all our patients to apply though. The benefits can be well worth it!

This short article is not substitute for speaking directly with an employee of the department of social services (typically in the county where you live) but is a quick overview of what I have learned over the past few years.


The US government offers monthly payments for qualified disabled patients as well as medical insurance for qualified disabled patients. Brief descriptions below.

Social Security Disability Insurance (SSDI)
Social Security Disability Insurance (SSDI) provides monthly cash benefits and Medicare entitlement(aka medical insurance)  to those blind or disabled individuals who have paid sufficient FICA and Medicare taxes on their earnings to meet certain insured status requirements. Spouses and children of SSDI recipients may also be eligible for cash benefits.

The most common reason patients get denied for these benefits is that you have not worked enough, therefore not contributed enough taxes, in the recent past, or total throughout your working career.

You cannot be actively working during the application process but I have been told you can be on FMLA (Family & Medical Leave), short or long term leave from your job.

Supplemental Security Income (SSI)
Supplemental Security Income (SSI) provides cash to meet basic needs for food, clothing and shelter to those age 65 and over, blind, or disabled who have little or no income. Individuals and their children may be eligible for SSI even if they have never worked or have an insufficient insured status for SSDI.

The income & asset threshold is very low, and that is the main reason patients don’t qualify for this benefit.

Each individual who applies for SSDI (usually eligible if you have worked for 10+ years full time & paid FICA taxes) is also screened for SSI benefits. SSI payments (for lower income patients with few assets) may be available during the usual 5-month waiting period before SSDI cash benefits begin. Those eligible for SSI may also be automatically eligible for Medicaid benefits.

Special notes about the Social Security Administration (SSA):

  1. SSA can make a determination of “presumptive disability” for SSI benefits. This provision allows SSA to pay up to 6 months of SSI payments before they make their disability determination, based on the finding that there is a high probability that the applicant is disabled. Therefore, persons with ALS, especially those with significant bulbar signs or gross disturbance of gait, should inquire about this provision at the time of application. (SSA does not provide for presumptive payments to individuals applying for SSDI benefits.)
  2. SSA has an expedited procedure for processing terminal illness cases to ensure that a favorable decision can be made expeditiously. The code word for this type of case is “TERI” case. A person with ALS may want to advise SSA, at the time of application, that TERI case procedures are appropriate and that ALS is a presumptive disability diagnosis.


Medicaid & Medicare – The Two Types of Government Insurance. It is possible some patients are eligible for both!

Medicaid provides health insurance for low-income and needy parties.

Certain states may have different Medicaid programs available for those who are not as financially needy, such as programs designed for catastrophic or high monthly out of pocket costs. A person who has any financial hardship should contact their State’s Medicaid program for information.

Medicare Waiver has reduced the waiting period for ALS patients
The usual 24-month waiting period for Medicare was eliminated for SSDI recipients disabled by ALS. Medicare entitlement now begins the first month the recipient receives cash benefits (approximately 5 months after an individual is deemed disabled)

Medicare Benefits
What is Medicare?
Medicare is a federal health insurance program administered by the Centers for Medicare and
Medicaid Services (CMS.)

Medicare has two parts:

Part A (Hospital Insurance)
Helps pay for: Care in hospitals as an inpatient, skilled nursing facilities, hospice care and some home health care. This coverage is free to SSDI recipients.

Part B (Medical Insurance)
Helps pay for: Doctors’ services, outpatient hospital care, and some physical and occupational therapy, and some home health care when they are medically necessary. There is a monthly premium for this coverage. If an individual is also a Medicaid recipient, their monthly premium for Medicare may be paid by their Medicaid benefits.

Should a Person Apply for Social Security Disability Insurance/Supplemental Security Income Benefits?
Yes! If you are under age 65, feel unable to work due to disability you should investigate possible SSDI and SSI entitlement benefits

It is important to remember that there is a 5-month waiting period for cash benefits to begin under SSDI. Therefore, it is possible that an individual who stops working may be without any income for approximately 5 months.

Other Considerations
Fortunately, The Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S.) Program provides free Social Security representation to the ALS community, as well has helpful planning and referral services. Feel free to contact them at 888-700-7010.
It is very important that individuals examine how their newly elected Medicare benefits will affect their current insurance plan. Your State Health Insurance Counseling Program (SHIP) has expert volunteers who can assist individuals free of charge. To locate your area SHIP agency, call 1-800- 677-1116 (Eldercare Locator) or go to

How Does Someone Apply for Social Security Disability Programs?

  • Individuals can apply for Social Security benefits by telephone or in person. To apply via telephone 1-800-772-1213, M-F, 7am-7pm EST. To apply in person, an individual may go to their local Social Security Administration (SSA) office to schedule an appointment. Sometimes you can call the office to schedule an appointment.
  • To obtain information regarding the SSA office nearest you, go to the Social Security’s website at For assistance with making an application to Social Security, an individual may also contact the A.C.C.E.S.S. program at 1-888-700-7010.

Initial claims decisions typically take 3 to 4 months. However, shorter or longer processing times are possible.

Additional Resources:
Medicare Information Line: 1-800-MEDICARE (1-800-633-4227)
Medicare Rights Center: 1-800-333-4114
Center for Medicare Advocacy: 1-800-846-7444

Click here for another excellent website for resources.