Help me understand disability benefits?

lgelb

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Like Nikki's sister, my husband was not eligible for any federal benefits or coverage due to lack of work credits (in his case, due to the Marfan he was born with). There is no way around that of which I am aware.

I am assuming you already have dependent coverage on a group plan, which will cover essentially the same services as does Medicare -- private plans typically follow Medicare guidelines with a few riffs. And, unlike traditional Medicare (as opposed to Medicare Advantage or Medicare + a supplement), your group plan likely has an out-of-pocket maximum.

There will be differences in copay levels and deductibles, of course, depending on plan design, but covered services and equipment will not be fundamentally different. They might even be slightly better.

When Larry was first diagnosed, a hospital staffer advised a divorce so he could get more benefits. We didn't.

Larry was on private insurance (usually my COBRA, a few months of individual coverage) throughout the ALS years until the last few months, when he turned 65, but even then he had to pay a Part A premium in addition to what others pay. Our private coverage paid for his power chair, hospital bed, suction machine, home PT, etc. with the same caveats as Medicare. We borrowed his Hoyer from the ALSA and self-paid for used BiPAPs.

I built a relationship early with an RN case manager, which was invaluable in getting equipment more quickly. You can call any private plan that bears primary medical risk for your care, and ask to be assigned a case manager.

Best,
Laurie
 

BlsdMama

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PALS
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05/2017
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IA
There is a topic in resources on applying for ssdi if that is what you mean. The ssa site has information too.

I agree that everyone should have insurance ( and financial support) when facing catastrophic illness if that is your point. . This is not the reality in the US at this time. As I stated above my sister was denied ssdi and medicare because lacked current work credits. This despite the fact that she worked from age 15 until the birth of her child 20 plus years later. She had other options and was ok. Others in the history of this forum have not been so fortunate. Ultimately when you have blown through all your assets there will be ssi and medicaid. The OP will hopefully find something better

Only in this case, I’ll suck everything my husband has and leave him bankrupt with nine kids still at home. This sucks. I only need 20 credits at my age - which I have. However, they need to be recent. I’ve been a homeschooling mom for 23 years.

The issue with private insurance isn’t out of pocket costs. It’s lifetime maximums. At one time DH’s insurance had a lifetime max of a million. Currently they don’t have a max, although as they are self funded, we do worry that my diagnosis could negatively affect his career. They are coming into a merger and we worry the new health insurance will have a maximum.

If I were older (or he was) I’d be eligible to share his credits. I’m in the loophole. We’ve seen a lawyer and he is suggesting divorce but he wanted to make some phone calls and then we meet with him again in a week. Unbelievable.
 

KimT

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I agree with Cathy. We are in a scary situation in regard to healthcare right now. I know this is political but it applies to everyone here. The current administration has wanted to repeal the ACA since it took over. Fortunately, the Democrats won the House so we still have it. Otherwise, we would not and goodness knows what we would end up with.
 

Nikki J

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Many people don’t realize ACA has protections for those with group coverage ( such as the removal of limits already noted) and also has some medicare protections so it impacts all of us. The pre existing condition and community rating for those PALS without a group plan or medicare access make the difference between having insurance or not. I have a PALS friend who relies on the ACA Individual plans She lives in fear. But all of us will see changes if ACA goes away
 
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