Because of incompetent social workers in the local office, things were not handled right for my husband. So we are now waiting for his Medicare insurance. Thank God we did finally find the right advocate to help us with his disability. In March 2019 he went through lung cancer surgery and then in November of the same year, brain cancer. He was approved for disability in December 2020, EOD. Now we wait for Medicare. Whoever decided that in our government has no compassion for people. I do not expect an answer. But for sick people to wait 24 to 29 months for Medicare when they can no longer make an income is ridiculous.
I'm sorry to hear of your husband's medical problems. I'm surprised your husband didn't get an earlier disability onset date, with two cancers in the same year (I think you're saying that your husband's established onset date of disability, or EOD, was in December 2020). Unfortunately, you're right, your husband will have to wait another year for Medicare coverage. There are two exceptions to this rule: those with permanent kidney failure (known as end-stage renal disease, or ESRD) and amyotrophic lateral sclerosis (ALS) aren't subject to the two-year waiting period. You would think that metastatic brain cancer and other life-threatening illnesses would also be on that short list, but unfortunately, they are not.
Medicare was originally intended for those over 65, and when Medicare was expanded to include persons with disabilities, a very expensive expansion, the two-year waiting period was added as a cost-saving measure. When Congress expanded Medicare to those with disabilities, it was their hope that, during the two years of the waiting period, disability recipients could either continue under their former employers' plans under COBRA or qualify for Medicaid. If you've ever used COBRA, however, you know that the premiums are very high, especially for someone who no longer has earnings from work. Things may be a little more hopeful on the Medicaid front for some people. About a third of disability recipients receive Medicaid coverage during the waiting period.
In three-quarters of the states, Medicaid has a "medically needy" program, so that individuals with high medical expenses but too much income to qualify for the regular program can still qualify for Medicaid. In these states, Medicaid applicants can subtract their medical expenses from their income in order to meet that state's Medically Needy Income Limit (MNIL). (Read more about this in Nolo's article on Medicaid's medically needy program.)
Unfortunately, over a third of disability recipients don't have health insurance coverage at some point during the Medicare waiting period. And it can be argued that this is the population that needs medical care the most. Indeed, about 4% of disability recipients die while waiting for Medicare coverage.
Over the last several years, there have been legislative attempts to phase out the waiting period and/or to eliminate it immediately for those with life-threatening illnesses (in addition to ESRD and ALS). Unfortunately, these attempts haven't been successful, due to the high cost of phasing out and eliminating the waiting period, estimated by some to be about $10 billion per year.
Can you please clarify "disability onset date" in regards to qualifying for Medicare? I became ill in 2018, hoped I would recover but did not, and filed for SSDI last December (2021). Even though Social Security agrees I was disabled since 2019, they say I can't get Medicare until the end of 2022. I thought the two-year waiting period for Medicare started at the disability onset date, and not after you've received 24 payments? Can you please clarify, since I have incurred some medical bills that I can't financially handle at this time?
Generally, the rule on Medicare eligibility for those who receive Social Security disability insurance (SSDI) is this: Eligibility for Medicare starts in the 25th month after you become eligible to receive SSDI payments. But when exactly do you become "eligible" to receive SSDI? Do you become eligible to receive benefits when your SSDI checks start getting deposited in your bank? Or as early as your disability onset date? Or as of your disability onset date plus five months, to make up for the SSDI waiting period?
Social Security calls the date you become eligible to receive SSDI payments your "entitlement date." Due to the five-month waiting period for SSDI, this date is five months after the date that Social Security establishes your disability began (your "established onset date," or EOD). You then count 24 months out from the entitlement date to see when you'll become eligible for Medicare. In other words, you can join Medicare 29 months after your established onset date.
In real life, it takes so long to get a disability hearing that applicants who go to the hearing stage of appeal to get benefits usually need to wait only a few months after their approval for benefits to be eligible for Medicare.
But, what if your disability onset date was years ago, or 2018 as you say? Unfortunately, this won't help you get Medicare benefits sooner since you didn't apply for benefits then. Because you didn't apply for Social Security disability until years after becoming disabled, or until 2021 in your case, your eligibility for Medicare won't start 29 months after the onset of your disability. Because of maximums set by federal law, your effective onset date can be no earlier than 17 months before the date you apply for Social Security benefits. For example, if you apply for benefits December 1, 2021, the earliest EOD you can receive is July 1, 2019.
In turn, this means the earliest date that your date of entitlement could be is December 1, 2020, and the earliest date you could be eligible for Medicare is December 1, 2022. (Your entitlement date can be only 12 months before you apply for SSDI. Social Security will pay retroactive benefits for no more than 12 months prior to your application date.)
In essence, an SSDI recipient can't become eligible for Medicare until at least one year has passed since applying for Social Security disability. Here's the takeaway: If you think you'll need ongoing medical treatment and can't afford it, apply for Social Security soon after you become unable to work.
For more information about the complicated interaction between onset date, application date, and waiting periods, see Nolo's article on how Social Security calculates backpay.