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Social Security Disability Insurance (SSDI) now makes it easier for patients with ALS to apply for disability. To meet the criteria for SSDI you must meet five criteria:

  1. You are no longer be able to have “substantial gainful activity.” This is defined as not making more than $940 a month. Not all income may counts in considering this sum, and there are many exemptions, so you will want to check with the Social Security Administration
  2. The diagnosis is “severe.” ALS qualifies
  3. The diagnosis is disabling. Again, the documentation of a diagnosis of ALS will qualify
  4. Based on your past history of employment, the current physical limitation must prevent you from continuing the work he/she previously performed
  5. You are unable to adjust to other work based on your age, education and work experience

Individuals who have worked and paid FICA taxes for a certain period of time qualify for Social Security Disability Insurance. Contacting Social Security will allow you know if your contribution to the system qualifies you. Social Security routinely sends statements to individuals informing them of the number of quarter they have participated in the Social Security system.

A person approved for SSDI is also entitled to Medicare. While SSDI pays cash benefits, Medicare A pays for hospital benefits, skilled nursing facilities, hospice and some homecare benefits. Medicare B is an additional insurance that must be paid for through a monthly premium. It covers doctor’s services, outpatient hospital care and some benefits which Medicare A does not cover. Medicare D is another optional plan which helps to pay for prescription drugs. It is available to anyone enrolled in Medicare. There is there is a cost to participation and benefits.

Disabled federal employees who did not pay FICA taxes are not eligible for SSDI, but may be eligible for Medicare. A person should check with their insurance plan and their human resources department in weighing their option to enroll in Medicare.

When applying for Social Security Disability Insurance, one should apply as soon as the above criteria is met. A applicant should not wait for a doctor’s documentation to be sent to SSDI first. There is a mandatory 5 month waiting period which starts the month after making the application. An individual can apply for SSDI benefits for up to 12 months before their actual diagnosis was made, if the disability occurred before then. However, the 5 month waiting period will be calculated into this time frame. For example, in order to receive retroactive benefits for the full 12 months prior to diagnosis, it must demonstrate that the disability occurred 17 months before the application was submitted.

Supplemental Security Income (SSI) provides cash benefits for individuals who are 65 or older, blind or disabled and who have little or no income. Every person who applies for Social Security Disability Insurance (SSDI) is screened for eligibility for SSI. A person may be eligible for Supplemental Security Income (SSI) payments even during the 5 month waiting period for SSDI. SSI recipients are also eligible for Medicare.

Medicaid is a health insurance program for individuals with no or little income. In Massachusetts it is referred to as Mass Health. It is a state and federal program and benefits vary from state to state. In Massachusetts, the state-sponsored Options Counseling Program can offer significant assistance to patients with ALS who need Personal Care Attendants (PCAs). The Options Counseling Program is available only to individuals who have Mass Health.

Applying for Social Security Disability (SSDI)

Applying for SSDI can be facilitated by calling 1-800-772-1213 or by going to your local Social Security Administration office. Information is also posted on www.ssa.gov. Applications can also be made online. Assistance in applying can be obtained through 1-888-700-7010.

Information you will need to apply include:

  • Proof of age and Social Security number
  • Name and address of doctors and hospitals
  • Medications and dosages you are taking
  • Marriage information
  • Dependent children’s names, addresses and social security numbers
  • Employers for last 15 years
  • Income statements such as W2 forms or income tax returns

Note: In late stages of ALS, when the disease is very advanced, the Social Security Administration is able to make a more expeditious decision. A person whose symptoms are advanced and is believed by the doctor to be in the terminal phase of the disease should make this know to Social Security to receive this expedited treatment.

Applications for approval of SSDI is determined by an agency in your state, designated the Disability Determination Service (DDS). Delays will be minimized in making a determination of eligibility by:

  • Applying as soon as you feel you are eligible
  • Not waiting for doctor’s letters or medical records to apply. However, once you’re application has been filed, this documentation should be obtained from your doctor as soon as possible to prevent delays.

Denial of SSDI Benefits

Right to appeal has strict time limits. Free representation can be obtained through the ACCESS program at 1-888-700-7010. Additional help can be obtained through the ALS Association Advocacy Department at 1-877-444-2572. Reasons for denial may include:

  • Not enough time worked or paid into Social Security
  • Not a US citizen
  • Not considered disabled
  • Failure to cooperate with the Social Security Administration


Social Security Administration


Medicare Rights Center

ALS Association Patient Hotlines