🎵"Paper Planes" EOA Alzheimers and Medicare Part B (MIA)
Updated: Jul 12
Becasue of the 3 month barrage of letters and choices there is a Part Deux of Medicare Part B Help- Yes it needs multiples
🧠IMPORTANT MEDICARE PART B CONFUSION (READ THIS EARLY)
This is the part that confused me the MOST, especially for younger Early Onset spouses still covered under employer insurance.
And honestly?
👉 The government letters explaining it are TERRIBLE.
So let me try to simplify this in caregiver language.
đź’Š MEDICARE PART B = THE MONTHLY PREMIUM PART
Official Medicare Part B Info
Part B covers:
Doctor visits
Neurologists
Outpatient testing
PET scans
MRIs/CTs
Durable medical equipment
Some therapy services
Unlike Part A:
👉 Part B is NOT usually free.
đź’° HOW PART B PREMIUMS ARE CALCULATED
This shocked me.
Your Part B cost is based on:
👉 PRIOR tax returns
Usually:👉 2 years earlier (NOT GOOD if your spouse was in a successful job and you were not, and now they qualify and make no money in the past year waiting for qualifications)
Meaning:
2026 premiums may use 2024 tax returns. When your spouse was working full time, was getting high pay, etc.
⚠️ WHY THIS MATTERS FOR CAREGIVERS
Many Early Onset families:
Had HIGHER income before disability
Sold investments
Took retirement withdrawals
Had bonus years before stopping work
So Medicare may think:
👉 You are still “high income”
Even when:
👉 Your life has completely changed financially.
🧠THIS IS CALLED IRMAA
IRMAA =👉 Income-Related Monthly Adjustment Amount
Translation:👉 Higher income = higher Part B premiums
đź’ˇ GOOD NEWS
If your income DROPPED due to:
Retirement
Work stoppage
Disability
Loss of income
You can request:
👉 A reconsideration/life-changing event review
đź“ť THIS IS THE FORM
VERY important for EOA families.
⚠️ WHY PEOPLE SAY “DON’T SKIP PART B”
This gets VERY confusing.
Some people delay Part B because:
👉 They still have employer insurance through a spouse.
That CAN be okay in certain situations.
BUT…
If you do NOT qualify for a special enrollment period later:
👉 You can get lifetime penalties.
đź’° THE LATE ENROLLMENT PENALTY
Part B Late Enrollment Penalty Explained
If Medicare determines:
👉 You should have taken Part B earlier
Your premium may permanently increase.
And rates can become VERY expensive later due to:
Penalties
Annual rate increases
Income adjustments
🧠WHEN IS PART B NOT NEEDED IMMEDIATELY?
THIS is where everyone gets confused.
✔️ IF SPOUSE HAS ACTIVE EMPLOYER COVERAGE
Sometimes you MAY delay Part B. I asked myself, is my job stable, how far away is my retirement, what is his life expectation?
KEY WORD:👉 ACTIVE employer coverage
Meaning:👉 Someone is CURRENTLY WORKING and providing employer insurance.
⚠️ IMPORTANT DISTINCTION
NOT:
COBRA
Retiree insurance
Marketplace plans
Those usually:
👉 DO NOT protect you from penalties the same way.
🧠PRIMARY VS SECONDARY INSURANCE (SUPER CONFUSING)
This part took me forever to understand.
✔️ IF EMPLOYER PLAN IS PRIMARY
The employer insurance pays FIRST.
Medicare may pay SECONDARY.
Sometimes families delay Part B here.
✔️ IF MEDICARE IS PRIMARY
Medicare pays FIRST.
Employer or supplemental insurance pays SECOND.
This often happens:
With smaller employers
Certain disability situations
After SSDI Medicare eligibility kicks in
⚠️ WHY THIS MATTERS
If Medicare SHOULD be primary and you declined Part B:
👉 You may suddenly discover bills NOT being covered.
This is why:
👉 Calling BOTH insurance companies directly matters.
Do NOT rely on random Facebook advice or me. I wrote HR myself to get a complete documented statement for my situation and workplace.
đź’ˇ QUESTIONS TO ASK YOUR INSURANCE HR DEPARTMENT
Ask specifically:
👉 Is our employer plan considered CREDITABLE coverage for Medicare Part B delay?
👉 Who is PRIMARY after SSDI Medicare eligibility?
👉 Will delaying Part B create coverage gaps?
🧠THE HUGE SSDI MEDICARE SURPRISE
Most people do NOT realize this:
👉 About 24 months after SSDI eligibility begins…
You are AUTOMATICALLY enrolled into:
Medicare Part A
Medicare Part B- No action means they start taking the amount out ONE MONTH PRIOR to getting the coverage (not arrears)
📬 THEN THE LETTERS START ARRIVING
And honestly?
👉 The letters are VERY confusing.
You start getting:
Enrollment notices
Premium notices
Deduction notices
Option forms
Most caregivers are already overwhelmed and exhausted when this hits.
đź’° WHAT HAPPENS IF YOU DO NOTHING?
If you do nothing:
👉 Medicare usually AUTO-ENROLLS you in Part B.
Then:
👉 The premium gets automatically deducted from SSDI checks.
Families suddenly notice:
👉 Lower monthly SSD payments
And panic.
⚠️ VERY IMPORTANT: THERE IS A TIME LIMIT
If you want to decline Part B because you truly have qualifying employer coverage:👉 You usually must act BEFORE coverage starts.
Generally:
👉 Around 60 days before effective date.
đź“ť TO REMOVE OR DECLINE PART B
This process can involve: (TOOK ME 3 calls, letters and finally reached a local angel who helped and stayed online with me, while I sent electronically)
Phone interviews
Forms
Confirmations
And yes:
👉 It can be frustrating.
⚠️ DO NOT DROP PART B WITHOUT UNDERSTANDING THE CONSEQUENCES
Because re-enrolling later:
👉 May involve:
Penalties
Delays
Gaps in coverage
This decision is VERY situation-specific.
đź’ˇ WHAT HELPED US MOST
✔️ Calling Medicare directly
✔️ Talking to employer HR/benefits
✔️ Speaking with elder-law/disability professionals
✔️ Reading EVERY letter carefully
✔️ Keeping copies of ALL notices
đź’” THE TRUTH
The Medicare system assumes:
👉 You understand insurance language
Meanwhile caregivers are:
👉 Sleep deprived and emotionally drowning trying to decode federal paperwork.
đź’ Final Thought
If you are confused about:
Part A
Part B
SSDI
Primary insurance
Auto-enrollment
Penalties
👉 You are COMPLETELY normal.
This is one of the most confusing parts of the caregiving journey financially.
Slow down.
Read carefully.
Ask questions.
Get professional guidance before declining coverage.
Because one wrong checkbox can create:
👉 Big financial headaches later.
đź’¬ Disclaimer
I’m not a doctor, lawyer, therapist, or expert—just a wife trying to figure this out one day at a Early Onset Alzheimer's Caregiver Blog | Real Life Resources & Supporttime. Everything shared here is based on our experience and things that have helped us along the way. Take what helps, leave what doesn’t, and always check with professionals when needed. I also use AI to help clean up my writing, organize thoughts, and pull together resources because honestly… caregiver brains are tired too. If something here helps another family feel less alone, then it’s worth sharing.
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