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My daughter has been disabled for over a decade and a half at the age of 17. She got on disability at 18 after realizing she wasn't going to be getting better. She was given automatic Medicaid but never received Medicare. Not until my husband turned 65 & went to claim & while doing this listed our daughter as a disabled dependent making her receive Medicare 2 yrs later from that date. However, she is told without living as a dependent with her father she will never have Medicare on her own. She is having to move out from us but doesn't want her to lose her insurance company she gets through Medicare. Social security doesnt have any answers for us besides that she was disabled before 21 & doesn't have enough tax credits, but it doesn't make sense. We don't want her health to suffer like it did when on Medicaid alone. Please help explain what the deal is and if there's any options.

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She can't receive medicare on her own work credits, since she doesn't have any. However, she should be able to receive medicare on her Dad's work credits WHEN he retires or dies. Call the Area Agency on Aging in your city.
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My understanding is that if you are disabled as a child before age 22 and qualify for SSDI (though a parents work history), they can get Medicare. It’s though the federal CDB program. Childhood Disability Benefits.

If you google “Medicare for minors” you’ll find quite a bit of useful info.

If they get better OR marry the CDB stops.

If they start working, it shows up in SSA database and then they get evaluated as to still being eligible for CDB coverage. Seems to have a strict equation as to how it’s done.

It could be that by moving out and becoming independent living she’s being viewed as “better”. I’d suggest you get a clear determination on this BEFORE she moves out.
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