Resource Applying for social security disability

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Senior member
Jan 20, 2014
This document is based on the recent experience of two PALS when applying for SSDI.

How to apply for Social Security Disability Benefits (SSDI)

This document is based on several PALS current experiences. Since government programs change frequently, you will need to check with Social Security for the most current information.

You can apply for SSDI as soon as you receive a definitive diagnosis of ALS from your doctor. You will automatically qualify as disabled since ALS is one of a few diseases labeled a TERI (Terminal) illness. This is important because your waiting period for benefits is reduced from 2 years to 5 months. (Edit. As of December 2020 the wait has been eliminated. Exactly how the timing will work is not yet clear but the rest of the process and requirements will probably not change ) However you must also stop working before you file. You are technically allowed to earn a small amount every month and collect but when applying saying you are working will lead to an automatic denial

This assumes you worked long enough and recently enough at a job that paid into social security. The number of work credits you need to qualify for disability benefits depends on your age when you become disabled. Generally, you need 40 credits, 20 of which were earned in the last 10 years ending with the year you become disabled. If you are 31 or older, you must have worked at least 5 of the last 10 years to pass the recent work test. Put another way, you will need to have earned 20 credits (one quarter of work equals one credit) in the 10 years immediately before you became disabled. However, younger workers may qualify with fewer credits so check with Social Security.

Those who haven’t earned enough to qualify for SSDI may still be eligible for disability benefits under the Supplemental Security Income (SSI) program. SSI has no work requirement, but applicants must be able to demonstrate financial need which means little or no assets or income.
  1. You can either apply online or call up your local Social Security office to make an appointment (not mandatory and sometimes depending on the office not possible) or go in person to the office.

    You will need the same information whether you apply online or in person, and you can follow up the online application with a phone call to Social Security to get additional assistance or ask questions. You also can begin your application online, save it, and then go in to your appointment to complete it.

  2. Inform them that you are applying for SSDI benefits and that you have ALS. On the application form you will be asked to provide the names of your doctors, the dates of tests run (such as EMG, blood tests, MRI, etc), and medicines you take. If you go in person to the office, you can also provide them with evidence of your diagnosis, a letter from your neuro doctor with the date of diagnosis and tests run. If you apply online they will contact your doctor’s office to verify the diagnosis. Remember, with a definitive diagnosis of ALS you will automatically meet the definition of disabled under Social Security.

  3. You will be screened for both SSI and SSDI benefits. You may get a letter from Social Security denying you SSI benefits, even if you never applied for them. Your SSDI claim is still being processed but they don't tell you that.
    • SSI benefits are for those with little or no family income; your spouse’s income will make a difference here.
    • SSDI is based only upon your work history and has nothing to do with any assets or other income you or your spouse might have.
    • Note: If you work with a spouse at a private business but your spouse has reported all the income from the business, you are not considered to have worked no matter how much time you put in, the same is true for housewives or househusbands. You must have reported income on your tax returns to qualify for SSDI.
  4. Call Social Security after a few weeks to see if your claim has been processed. I found out after a month that mine had been approved in 2 days. You may have to go in person to your local office to get this information although you should get a letter in the mail (I never got one).

  5. Your first day of entitled benefits is the 1st of the month, 5 months after your disability began (so if your disability started on May 20, your first month of benefits would be November) however YOU WILL NOT GET YOUR FIRST CHECK THEN. You will get your money later depending on when your birthday is, and typically this won’t start this until the month AFTER you should start getting benefits. So for instance, if you are supposed to start receiving benefits on November 1, you won’t actually see any money until sometime in late December. After that you will receive a check every month on the same day for that month’s disability pay. It is frustrating, but it actually takes 7 months from your diagnosis date to begin receiving benefits

  6. VERY IMPORTANT: You will be eligible for Medicare at the same date you are eligible to receive SSDI benefits, the 1st of the month 5 months post disability. In the above example your Medicare coverage would begin on November 1st .

    You will receive Medicare Part A and Part B.

    Medicare A is free to those on Social Security. It covers hospitalization, skilled nursing facility care, and hospice.

    Medicare B costs approximately $100 a month and covers doctor costs, outpatient care, and Durable Medical Equipment (DME). The cost for this will come out of your monthly payment from Social Security.

    Typically, Medicare covers 80% of the cost of a medical event, and you would be responsible for 20%. Since the 20% you will be responsible for can run very high for certain DME such as power wheel chairs and medical procedures, many people choose to purchase Medicare Supplement plan, which covers the remaining 20%. Many of the supplemental plans also include Medicare Part D, which is for prescription drugs.

    Additionally, you can purchase Medicare Parts C & D

    Medicare Part C (supplemental plan)

    If you will be purchasing a Medicare Supplemental plan, you must check to see what the options are within your state as they vary greatly between states. Very Important: Before you purchase any plan MAKE SURE YOUR DOCTORS are INCLUDED in the plan. In some states if you are under age 65 your choices for supplemental plans are limited to Medicare Advantage Plans.

    Medicare Part D (prescription drugs)

    Very Important: Before you purchase a Plan D, check to see what the costs for your prescriptions such as Riluzole or Nudexta will be as these also vary widely between different plans. Some supplemental plans automatically include Medicare Part D, so ask about this, too.

    It is all very confusing, so it is best to have a knowledgeable person assist you in making this choice. An insurance broker can be helpful to advise you, even if you do not end up purchasing a plan through them.

    You should have a Medicare plan picked out and applied for before your Medicare coverage begins (again, check and see what the rules are within your state). Another option for some is to continue using medical coverage through your spouse. Once you become eligible for Medicare, COBRA coverage ceases so you cannot continue this coverage even if you wanted to. I think this does not hold true if you are working after your disability but you will need to look this up carefully.

    Many states do not require companies to provide Medigap coverage to anyone under 65 and even those that do often only allow you minimal gap coverage, so you are essentially left with a choice between traditional 80/20 Medicare (parts A,B and D) or a Medicare advantage plan in your area. Now that Medicare has changed the rules to make it much harder to get useful speech generating devices you should also look at alternatives that do not involve Medicare for these necessary devices. You local ALS clinic can help with that.

  7. If you are receiving disability from a company or state or federal agency, once you start receiving SSDI you MUST report this to the agency sending your checks. Most short and long term disability plans reduce the amount they send you by the SSDI amount you receive. If you don't do this and they find out, they will require full repayment usually at once for any overages they have sent you.

    Also, all of these disability plans are different, so some may require you to report any pensions you are receiving from other companies or agencies as well. You will need to read your particular plan very carefully to determine what needs to be reported. See a lawyer if necessary.


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