Help me understand disability benefits?

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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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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
 

ChristineRK

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When you work a job that contributes to social security you earn credits up to 4 a year. They are based on how much you earn so a highpaying job could earn 4 credits in the beginning of the year. It is based on age how many are required for disability. If you are 30 it is fewer than if you are 60 For example. The most you need at any age are 40 total but 20 have to be in the last ten years so you have to have worked 5 or the last ten years
Hi Nikki!
I'm so sorry - I can't believe I didn't thank you for getting back to me! :)

Hey - since you seem to know a lot about this - currently I'm considered 'retired' due to the ALS diagnosis, but I receive SS and disability AND where I work (I didn't want to stop) is paying for my medical mutual premiums for a few more months. My question to you is - should I shop around for add'l private insurance after my Medical Mutual stops OR does Medicare seem to take care of almost everything (within reason).

Thank you Nikki!
~Christine
 

Nikki J

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Yes you need something other than original medicare. It only covers 80 percent. Your options are to look at medicare advantage. For some it works really well. It is an hmo like many of us have when working. You usually need a pcp, referrals and pay copays. They often have a pharmacy component not always. You would need to examine the doctor network and drug formulary.

alternatively you need your medicare part a and b plus a part d which is a pharmacy plan and also a medigap plan to cover the 20 percent that medicare does not. These plans can be pricey for under 65 because they know you are disabled.

whether medicare advantage works is really location dependent.
all states have ship counselors / volunteers who are trained to help you sift through plans
 

ChristineRK

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Yes you need something other than original medicare. It only covers 80 percent. Your options are to look at medicare advantage. For some it works really well. It is an hmo like many of us have when working. You usually need a pcp, referrals and pay copays. They often have a pharmacy component not always. You would need to examine the doctor network and drug formulary.

alternatively you need your medicare part a and b plus a part d which is a pharmacy plan and also a medigap plan to cover the 20 percent that medicare does not. These plans can be pricey for under 65 because they know you are disabled.

whether medicare advantage works is really location dependent.
all states have ship counselors / volunteers who are trained to help you sift through plans

Thank you so very much, Nikki! I hope you have a wonderful holiday. :)
 

ChristineRK

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Thank you so very much, Nikki! I hope you have a wonderful holiday. :)
(Nikki - If this is crossing a line or not appropriate for this site, PLEASE accept my apologies. It is not intentional to hurt anyone. May I ask how far along you are? What you can/cannot do?

Again, sorry in advance if this is something I shouldn't be asking.

Sincerely,
Christine
 

Nikki J

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I am lucky to be extremely slow in progression. I walk with an afo and although I am clinically weak in all extremities can manage to live independently. Just don’t ask me to run hop skip jump or walk on heels toes
 

KimT

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The ACA limits the amount insurance companies can change under-65 disabled for Part B up to THREE TIMES the rate that people 65 and over pay. It was a concession. The current administration wanted to increase it up to FIVE TIMES but, fortunately, the plan to repeal and replace was blocked by the current House of Representatives.

Here is an example. I became disabled at the same time a good friend turned 65. We both had the same supplement which was the richest one. She paid $179 a month and I paid $530. In four years my premium has gone up to $600 a month.

Like it or not, this is a very political issue and 2020 will affect everyone with ALS, one way or another. It makes me wish I had stayed in public accounting and retired with more money. But hindsight is 20/20, right?
 

ChristineRK

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I am lucky to be extremely slow in progression. I walk with an afo and although I am clinically weak in all extremities can manage to live independently. Just don’t ask me to run hop skip jump or walk on heels toes

LOL!

Thanks for all of your help, Nikki!

Have a beautiful holiday and a Happy New Year!

~Christine
 
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