Medicare Under 65 – Disability, ALS and ESRD Explained

Most people think of Medicare as a 65-and-older thing. But you can get Medicare earlier because of a disability, ALS, or kidney failure.

The rules are different from the turning-65 path. The timing is different. And your options for a supplement can be different too.

Here's how it works, in plain English.

The mental model: three doors to early Medicare

There are three main ways in before 65:

1. Social Security disability benefits. Medicare starts after you've gotten disability benefits for 24 months.
2. ALS (Lou Gehrig's disease). Medicare starts as soon as your disability benefits start. No 24-month wait.
3. End-Stage Renal Disease (ESRD). Permanent kidney failure that needs dialysis or a transplant. Timing is tied to your treatment, and you have to apply.

Each door has its own clock. Know which one is yours.

The analogy: a countdown timer

For most people on disability, Medicare works like a countdown timer. Once your disability benefits start, the clock runs for 24 months. On month 25, Medicare turns on.

ALS skips the countdown. ESRD has its own, shorter timer that depends on your dialysis or transplant.

Door 1: Social Security disability (the 24-month wait)

If you get Social Security disability benefits, you're automatically enrolled in Part A and Part B after 24 months of benefits. Coverage begins with the 25th month.

Your Initial Enrollment Period works around that date. CMS describes it as starting 3 months before your 25th month of benefits and ending 3 months after.

What to do: - Watch your mail. Your Medicare card and welcome package should show up before your start date. - Decide whether to keep Part B. It has a monthly premium. If you're covered through a job, you may have options, so ask before declining.

Between now and then: If you have no other coverage during the 24-month wait, Medicare says you can get a Marketplace plan. Once you're eligible for Medicare, you generally won't qualify for financial help on a Marketplace plan.

Door 2: ALS

If you have ALS, Medicare starts the same month your disability benefits begin. The 24-month wait was waived for ALS in 2001.

There's more good news. Since July 23, 2020, Social Security also waives the 5-month waiting period for disability benefits for people approved with ALS.

Door 3: End-Stage Renal Disease (ESRD)

With ESRD, Medicare isn't automatic. You apply, usually with Form CMS-43 through Social Security.

When coverage usually starts, according to CMS: - On the fourth month of dialysis at a dialysis facility. - As early as the first month of dialysis if you take part in home dialysis training at a Medicare-approved facility under certain conditions. - The month you're admitted for a kidney transplant, if the transplant happens that month or within the next two months.

Ask your dialysis care team where to start on the paperwork.

Supplements under 65: the tricky part

Here's where it gets uneven.

Federal law generally doesn't require insurance companies to sell Medicare Supplements to people under 65. That's left to the states.

Missouri: Missouri's Medigap shopping guide covers this. People under 65 approved for Social Security disability have a guaranteed right to buy Medigap insurance when they enroll in Part B. The price may be different from what people 65 and older pay.

Kansas: Kansas's Medicare Supplement Shopper's Guide says the six-month open enrollment period also applies to you. That's if you're under 65, have Medicare due to disability, and are enrolled in Part B.

Then at 65, you get another shot. When you turn 65, you get a new 6-month Medigap Open Enrollment Period. That's a good time to look again, since pricing for 65 and up is often different.

Compare supplement pricing in your area with our Medicare Supplement rates tool. Or see our Missouri Medicare and Kansas Medicare pages.

Your other options

Once you have Parts A and B, you can also look at:

• Medicare Advantage plans offered in your area
• Part D drug plans if you go with Original Medicare
• Extra Help and Medicare Savings Programs if your income and resources are limited. It's worth checking.

If you're working with job-based coverage

Maybe you have Social Security disability plus group coverage from your own or a family member's current job. Social Security says you then have a Special Enrollment Period and premium rights similar to workers 65 and older. In other words, you may be able to delay Part B without a penalty. Check with the employer's benefits office before you decide.

Things I'd do (and never do)

1. I'd mark my 25th month of disability benefits on the calendar. That's when Medicare starts.
2. I'd look at supplements right when Part B starts. That's when Missouri and Kansas rules help most.
3. I'd look again at 65. You get a fresh Medigap window then.
4. I'd never decline Part B without checking my other coverage. Late penalties can follow you.
5. I'd never assume ESRD Medicare is automatic. You have to apply.

Getting Medicare early? Let's map your options

We'll walk through your start date, your supplement rights in Missouri or Kansas, and any savings programs you may qualify for.

Call (417) 633-7200, or stop by our Springfield office or Topeka office. We can also talk by phone if getting out is hard.

One clock at a time. We'll keep track with you.

— Matt

Frequently asked questions

How long do I wait for Medicare after getting SSDI?

Generally, 24 months. You're automatically enrolled in Part A and Part B starting with your 25th month of Social Security disability benefits.

Do people with ALS have to wait 24 months for Medicare?

No. With ALS, Medicare starts the same month your Social Security disability benefits begin.

When does Medicare start for kidney failure (ESRD)?

Usually on the fourth month of dialysis at a facility. It can start sooner with home dialysis training or a kidney transplant. You need to apply.

Can I get a Medicare Supplement under 65 in Missouri?

Missouri's shopping guide says people under 65 approved for Social Security disability have a guaranteed right to buy Medigap when they enroll in Part B. Pricing may differ from rates for people 65 and older.

What happens to my Medicare when I turn 65?

Your Medicare continues. You also get a new 6-month Medigap Open Enrollment Period at 65, which can open up more supplement options.